I thought that live-in care was the answer

[HelenInBC]

My mother with AD was doing a lot of night-waking and depending quite a bit on her male friend who lives in her building. She was wandering out into the lobby during the nights. I was getting concerned about possible wandering.
My siblings and I made the decision to arrange full time, line-in caregivers for her. She was very resistant to the idea, but we were firm with her and the care began about 2 months ago. There are 2 people who split the week and stay with her all the time.
The problem is, she won't let them do anything. No cleaning and no cooking. She gets angry if they try to accompany her out to the lobby for coffee time in the mornings, or to play cards in the afternoon or evenings. She won't allow them to make a grocery list (she can do it herself!) she avoids going shopping for food and they need her to pay for the groceries, so they can't go alone. She has become so attached to her male friend that she gets angry if he has conversations with other people in her presence. She imagines that he is sneaking around spending time with other ladies, so when he leaves her she goes out to the lobby to try to find him, over and over again. He is very social in the building and enjoys playing cards or just spending time in the common area with other residents. Sometimes she goes upstairs to his apartment and knocks on his door looking for him, even in the late evenings. If the caregivers try to stop her she gets angry.

She is paying over $6000 a month for this care, but the more I think about it the more I wonder what she is actually paying for. They can't follow her to see where she is going, so what if she wanders outside? Will they even know?

Just don't know what to do anymore. Things are getting much more difficult to manage.

 

[Jessbow]

Its the reverse of the normal complaint ''......the carer wont because.....'' Its that your mother wont allow the carer.
Who does the cleaning? Who does the cooking? If the answer is ''mum'' then she isn't ready for a live in carer,

How does her male friend deal with her persistence? Maybe he needs to get on board with you guys and be cruel to be kind in essence- Give her the brush off - although that for a time will make her unhappy.

What would happen if the carer locked the door at say 6pm, so she couldn't get out of her space?

 

[Jaycee23]

Hi
Do the carers have in a contract what they are supposed to be providing. Have they qualifications in caring for those with AD? Do they wear a uniform? Maybe they need to find ways of being your mums friend and when your mum does her insisting they can lead from that and ask her to tell them what needs to be done. They could ask her to take them to the shops. Your mum sees them as strangers intruding in her life as of course she is fine and its everybody else. The important task is to get her to trust them before she is going to move on. I think that her man friend could for the time being put down some boundaries to prevent what could easily become an obsession. Just some ideas and hope that helps.

 

[HelenInBC]

Thank you all for your comments. In answer to some of the things you have asked/mentioned:
My mom has a monthly house cleaner. She "thinks" that she does the cleaning in between, but she doesn't. There is much that needs to still be done. She no longer can manage the appliances on her own, and she can't see well enough to clean anything properly.

As far as the cooking- Nobody is actually cooking. She can prepare a bowl of cold cereal for breakfast. Dinners are frozen meals, heated in the microwave,but she has to be supervised because she can't remember how to use it correctly. She refuses to let the caregivers cook proper meals because she wants to "cook dinner" for her male friend herself. This also means they don't get cooked meals for themselves and are forced to eat packaged food.

Jaycee: The carers are supposed to be cooking (or helping her prepare) meals, taking her for walks, shopping and other outings, keeping her busy so she doesn't bother other residents and her male friend, and making sure she doesn't wander out during the night. They wear their own personal clothing but they have experience caring for dementia patients.
Right now, I don't think they are really providing a service. Today when I arrived, the caregiver seemed to have been woken from a nap and she went to look for my mom in her room, then realized she must have gone out to the lobby.
I don't like the fact that she didn't know where she was, but if my mother refuses to let her accompany her, how can she keep track of her movements?

Jessbow: the carers are not allowed to 'lock her in'. They are told to monitor her, but not stop her from doing anything that isn't harmful. They discreetly follow her if she goes out at night, but I wonder if she goes out sometimes and they don't notice. She can be crafty that way.

Unfortunately, she sees the carers as standing in the way of relationship with her male friend. She thinks they are pushing him away, when in reality he is trying to be kind to her, but spend less time with her. We have tried talking to him about it. He insists that he wants to help as much as he can, but I feel his involvement in her life is causing her to become more and more obsessed with him. When she gets it into her head that he's left too soon after dinner, she won't sleep all night and will be up and down going to the lounge looking for him.

I think it's time for a meeting with the caregivers and the manager. I hope they have some ideas about how we can manage things better.

 

[zeeeb]

If she's paying for all this "care" and getting none of the benefits from it, why don't you just cancel most of it, perhaps have a carer do a couple of short pop ins in the morning and evening to check on her and see if she needs any help with anything. Surely that's going to save her money, and she'll still be checked on.

Seems Pointless paying for someone to make her meals, when she's only going to eat frozen.

Perhaps at some stage, when the pressure is off, she might ask them to pop down the shops for her or something if she feels like it's her choice.

Eventually a crisis will occur and the car will have to be stepped up, but until then, if she gets a monthly clean and gets checked on regularly, what more can be done?

 

[HelenInBC]

Thank you Zeeeb. I've actually thought of pulling out the live-in caregivers, since she seems so unhappy having them there. The trouble is, then she will start up with the constant phone calling (to me) again. The waking at night is the part that worries me the most. I fear her wandering outside suddenly. There have been a few cases in the news here locally of folks with dementia disappearing. So far, she seems only to wander out to her building lobby, and perhaps upstairs to knock on her friend's door. The one thing that the caregivers do is ease my mind to a certain extent. At least with them there, I know she is eating and not getting lost. Perhaps for now that is enough.

It's sad that there is no solution she will be satisfied with. I know I am lucky that I still have my mother and that sometimes she even seems a bit like the one I remember. It's just so hard to see how she has changed and how vacant, angry and disoriented she is much of the time now. I'm ashamed to say that I dread going to see her now, as it is so upsetting to be around her.

 

[Anongirl]

Hi HelenInBC. I've pondered your predicament because my mum lives alone and I worry because I have no idea what goes on day to day.

What really did concern me was when you said the carer appeared to wake from a nap and didn't know where your mum was. Not good at all. I know what it's like to be tired out from looking after someone (my toddler son has never been a good sleeper!) but the next day if I was tired out I still looked after him. I wouldn't dream of just leaving him wandering around which is exactly what this carer did. She wasn't doing her job, the thing she is being paid to do!

Anyway. I've been trying to think of advice and I think what I would do (in fact what I did) is to introduce help gradually. Someone bobbing in in the morning for a chat, helping her with breakfast, etc. Then perhaps someone to make sure she's had her evening meal and reassuring her it's bedtime and to lock the door behind them when they leave. If eventually she's happy to accept that then perhaps have someone pop in in the afternoon for a chat and to help with lunch.

My mum started with carers coming in to give her her tablets but now she's more willing to accept more help from them. She's very independent like your mum so I had to sort of sneak help in gradually! What I've learnt is if it becomes part of mum's routine eventually she may accept it.

As for the chap, that's got me stumped. If he's happy to help perhaps he could insist that he only visits her (she doesn't go knocking on his door). Then he can go at a planned time. I know this is simplistic and it's probably unlikely she will stick to it but I've not got experience in that area!

I feel for you. It's not easy is it? xxx

 

[HelenInBC]

Anongirl- thanks for your comments. I wish we had the option of gradually introducing care. Well, actually I guess it's what I did really. We started with just having her medication delivered daily- the pharmacy provides this service and they watch her take her pills, change her patch and assist with her eyedrops. She slowly adjusted to this and now accepts it. Then, I added a companion who came a few times a week to take her for walks, help with groceries, take her on errands, etc. This was increased to 5 times a week and then it became clear that she needed more than just a couple of hours a day and I increased it to 5 hours a day, then we decided to go for the 24 hour care as her night waking became a constant concern. She was making calls in the middle of the night, and wandering out to the building lobby.
The full time care has been there for over 2 months now and she is resisting them all the way. I think it's a combination of cultural differences (they both have foreign accents) and just the idea that someone is living in her home and she feels her space is being violated.
I've thought about cancelling it and trying having someone there only at night, but because of the hourly cost, we would be paying more that we do now for 24 hour care. Ridiculous, but true. Also, if I took the care away now I think she'd be completely lost. I would be worried that she wasn't eating and she'd be calling me over and over with questions like she did before.

I've decided to have a meeting with the care company and one of the caregivers. We will try to set up a plan of care to try to break through her resistance and encourage her to let them help her. I know there are no easy answers to the problems. This disease is a nightmare!!

 

[Anongirl]

It's a huge worry.

It's sounds like you've done everything in your power to help your mum. Thing is if she has definite ideas of how she wants to live she will fight you all the way. My mum has said to me that she finds it humiliating having people help her and I completely understand that. She's quite a private person and it's taken a long time for her to accept strangers in the house. I guess because they're not strangers to her now!

However I know having carers overnight would be met with total consternation. And tears. And arguments.

I honestly don't know what I will do when I get to the point where she needs 24 hour care. I worry about it a lot.

I hope you can find a solution when you talk to the care agency xxx

 

[marsaday]

Hi Helen,

I think your situtaion just shows that full-time care at home sometimes just doesn't work. Before my Mum went into care I thought that, if it could be afforded, full-time carers would be the best option. But we couldn't have justified the cost and there are the difficulties that you have pointed out- well who wouldn't object to 2 strangers living in their house full-time.

I can understand the carers predicament too- but sleeping on the job?? Sounds like you are wasting your/her money.

The short visits sound like an option until it's time for a care home. Do you have any supported living facilities specifically for dementia? My Mum, who was a bit like your own-didn't see that she needed help but would be ringing me constantly- was in one of these for the guts of a year and it was a life-saver (for us). Sadly she is now in a nursing home.

 

[Canadian Joanne]

Helen, I know this is going to be very difficult for you, but it's sounding like your mother needs more than her own apartment (or is it a retirement home?). She may in fact be close to requiring a long term care facility, which is what we call nursing homes in Ontario. I realize you may not think so but just as a precaution, I think you should have your mother assessed by whoever is supposed to do so in BC. But, in my unprofessional opinion, based on my mother's behaviour, I think your mother is close to fulfilling the requirements, if she isn't already there.

As for the $6000/month care, since your mother doesn't allow the caregivers to do what they are paid for, I would definitely scale it back.