Managing home carers for mum. Food and bereavement

[Farawaygirl]

i know from reading the threads that I am very lucky in many ways - but I am stumped about what to do.
My mum was recently diagnosed with mixed dementia (Alzheimer’s and vascular) mid stage after years of me being worried.
My dad died in hospital last year (Parkinson’s Dementia pneumonia ) after 6 weeks there.
The thing is mum is still at home managing on her own with carers going in three times a day to give medication and food.
Two problems have emerged.
1. Mum does not accept that dad has gone. I’ve done the memory book , poems. Everything. She had a bad bad night in May and was so distraught that we were lying to her that I now tell her that Dad is resting / sleeping in hospital. I say I’ll call to see how he is. And we mostly jog along with that.
BUT the carers have a problem lying to my mum. It makes me mad because she is so much calmer when she thinks dad is still here. Any tips on how to guide them to help mum ?
2. The care agency make a big thing of delivering choice - so they ask mum what she wants to eat. Sometimes she will repeat the last thing she’s eaten.
Because different carers are going in it is hard to get any consistency. I wrote a weekly menu plan - and mum has just called to ask me to tell them she doesn’t want any big dinner. I’m stuck. Mum only really likes ice cream and biscuits and tea. Is that ok ??? I worry that I am neglecting her by not helping on this. Any advice ??

 

[canary]

Hello @Farawaygirl

I think you need to talk to the care agency manager because the carers who are coming in are obviously not experienced in dealing with dementia.

You are quite right that therapeutic untruths (aka, love lies or fibbing) is the best way the deal with the loss of your dad. She will not remember that he has died and every time someone tells her the bad news it will be like the first time she has heard and will be devastated all over again.. It is, in fact, the recognised way to deal with it. If they wont take it from you, perhaps they will take it from their manager.

As to the problem of the meal, choice is all well and good, but you cant use open ended choice - if you ask "what would you like?" she will not be able to remember what she can choose from (which is why she just says the last thing that she had). The best way to deal with this is to give her a choice, but from only 2 items. "Would you like shepherds pie, or would you like stew and dumplings?" is a much more meaningful choice for her as she then knows what she can choose from and isnt overwhelmed by too much choice.

This is such basic stuff that the carers aught to know and even if they didnt know, they should take it from you as you know the best way to deal with your mum. Hopefully a talk with the manager will sort things out. If there are continued problems, however, you may have to find another agency

 

[Sirena]

Have you spoken to the care manager to explain why you don't want to distress your mother by repeatedly telling her your dad has died? Do the carers have experience of dementia? If they don't want to 'lie', they could simply say "your daughter told me he's resting in hospital". You'd think they would be able to think of that for themselves, but since they haven't you will need to suggest it.

Re the food, can you suggest they give her a choice of two things rather than just saying 'what would you like' - hopeless, she won't easily be able to make open decisions. So - "would you like A or B for lunch"? She still has a 'choice' then.

In terms of what she eats, you have to go with the flow and let her have what she likes, particularly as you are relying on carers. The carers tried to get my mother to eat porage for breakfast which worked briefly, but she was soon back to having a less nutritious croissant. Dementia tends to give a liking for sweet food hence the ice cream and biscuits, would your mother eat fruit e.g. strawberries and cream? I noticed that the CH give the main meal at lunchtime and just a snack in the evening, which presumably works for the residents, would it help if 'dinner' was in the middle of the day?

 

[RosettaT]

I agree with the above posts. It sounds to me as tho' you need to speak to the management and voice your concerns as they don't appear overly au fait with dementia. Perhaps the carers could get away with somthing like 'I haven't heard how your husband is today, I'll ask your daughter to ring you', if she asks.

My OH will eat anything but on good days I will ask if he would like either abc or xyz but if I asked what he would like he would just be overloaded. If my mum refused food her carers would make her a sandwich and leave on her table with a carton of juice. She would generally eat 1 or 2 of them.

 

[Rosettastone57]

i know from reading the threads that I am very lucky in many ways - but I am stumped about what to do.
My mum was recently diagnosed with mixed dementia (Alzheimer’s and vascular) mid stage after years of me being worried.
My dad died in hospital last year (Parkinson’s Dementia pneumonia ) after 6 weeks there.
The thing is mum is still at home managing on her own with carers going in three times a day to give medication and food.
Two problems have emerged.
1. Mum does not accept that dad has gone. I’ve done the memory book , poems. Everything. She had a bad bad night in May and was so distraught that we were lying to her that I now tell her that Dad is resting / sleeping in hospital. I say I’ll call to see how he is. And we mostly jog along with that.
BUT the carers have a problem lying to my mum. It makes me mad because she is so much calmer when she thinks dad is still here. Any tips on how to guide them to help mum ?
2. The care agency make a big thing of delivering choice - so they ask mum what she wants to eat. Sometimes she will repeat the last thing she’s eaten.
Because different carers are going in it is hard to get any consistency. I wrote a weekly menu plan - and mum has just called to ask me to tell them she doesn’t want any big dinner. I’m stuck. Mum only really likes ice cream and biscuits and tea. Is that ok ??? I worry that I am neglecting her by not helping on this. Any advice ??

My mother-in-law had carers in three times a day for 3 years and in my experience you have to be proactive in getting the care agency to do what they're supposed to do . I agree with other posters that you need to address the issue of love lies as we call them with the agency and the manager. I told the manager of the care agency that if the carers had difficulty with any awkward questions from my mother-in-law the standard response from them was for my mother-in-law to phone my husband. We didn't expect any of the carers to deal with personal questions and that was made very clear to the care agency manager. My mother-in-law used to try and talk to the carers about personal issues within our family and I told the manager that the carers were simply to say "oh I see oh ok you have to talk to your son". And not try and engage any further in this discussion.

Regarding the meals issue it was always a problem with mother-in-law sometimes trying to get her to eat a dinner. But like other posters have said we got the carers to dish up a hot meal at lunchtime. The carers brief was to heat up a microwave meal whether my mother-in-law liked it or not and invariably nine times out of ten once it was dished up and the carers were there chatting to her she would eat it. The care plan also stipulated that the carers in the morning would make her a sandwich leave it in the fridge for her to have later. Sometimes she ate this at lunch time rather than the meal but there was always those two choices available. And only those two choices. I made sure that in the fridge available for the sandwich was a choice of fresh food . The carers were told that they could ask my mother-in-law what choice you wanted for a sandwich so it gave the idea that she was partly in control. All this was stipulated in her care plan and often we tweaked it as we went along. It's not easy particularly where you have new carers and often different carers every day .