Carer dilemma

[Dollydaydream1]

My mother was diagnosed with Alzheimers in the summer of 2014. She lives on her own, with some support from a carer who visits once every evening to give mum her medication, and do some basic welfare checks (making sure lifeline on and that the bath lift is on charge). Plus she also has a home help for a couple of hours a week to do the housework. I spend about half the year out of the country, and mum is supported by my daughter when I'm away.

Recently it has become clear that mum would benefit from more support. She is now forgetting to change her clothes or wash, and eating regular meals or indeed, buying food (except milk, cat food and breakfast cereal) seems to be concepts that no longer occur to her. I would like to introduce more care for mother, however the agency that I currently use do not have availability. I have approached another agency who seem to be switched on as to the needs of a dementia sufferer (the importance of building up rapport etc), and have also made some interesting suggestions, such as using a whiteboard for the day's events, which the carer can update with mother every morning.

My dilemma is: should I wait for the current agency to have more availability (they have indicated that they should have space in the New Year, however I'm not convinced as from past experience, it depends who I speak to in head office as to what reply I get, and previous promises have not always been fulfilled). Or should I switch to the new carers, whose agency seem more organised and geared up for dementia sufferers.

As mother appears to have settled into a routine at the moment (albeit one of not washing/changing etc), with just a 15 minute visit from the same carer every evening for a medication and welfare check, should I keep the status quo? I am becoming a little frustrated by the current agency, who I have to constantly chase up, and I would feel more at ease if mother had more care sooner, however I am concerned that she may be unsettled by change, and react unfavourably. Her view is that there is nothing wrong with her and she is adamant that she doesn't need a carer. (She thinks of the current carer as 'the eye drop lady'). But I am constantly visiting and prompting her on a daily basis. Also I cannot do this when I'm away for months on end.

To be honest, I do not want to have this role: I would like to feel that mother is being taken care of, so that when I visit, we can have quality mother-daughter time. At the moment it feels like worry about mother and what to do is taking over my life. I also do not know how to broach the subject of the new carers with mother. I think I need to find a way to put this to her so that she does not feel her independence is being taken away. Any ideas?

 

[Beate]

You say there are problems with the current agency whereas the new one seems to be more switched on. Also, the current agency has no availability. Doesn't sound like a dilemma to me. Why would you want to keep the status quo if that is not enough anymore? You have identified the need for more care, so don't delay.
Try to sell more care as a help to you rather than her as you're away so much. If she accepts the "eye drop lady", she'll accept the new carers. If not, say it's doctor's orders, and it comes free with the NHS. She doesn't need to know the details.

 

[Dollydaydream1]

You say there are problems with the current agency whereas the new one seems to be more switched on. Also, the current agency has no availability. Doesn't sound like a dilemma to me. Why would you want to keep the status quo if that is not enough anymore? You have identified the need for more care, so don't delay.
Try to sell more care as a help to you rather than her as you're away so much. If she accepts the "eye drop lady", she'll accept the new carers. If not, say it's doctor's orders, and it comes free with the NHS. She doesn't need to know the details.

My worry is that she accepts 'the eye drop lady' and is used to her coming everyday. Also, I like her too. In fact, I feel bad changing agencies because I have developped a friendship of sorts with the current carer who comes round every day, and the agency have never let us down. I do not want her to think that it is any reflection on her. Having said that, I'm not sure that mum has taken to her as much as I have. I think I will try to be there when the carer comes round tonight, to observe the interaction (although this may be different with me there too). My mother will not give any opinion either way on her carer. If I ask her a couple of hours later if she has been round, mum looks at me blankly and says 'I don't know'. But the new agency, after their initial visit, phoned me up and asked me what mum thought of them. Apparently they had expected me to enter into a discussion with her after they had left, to see what she thought of them. I explained that mum had not made any comment at all after they left (in fact I think she was quite worn out by the visit), and I had thought it best to make things as normal as possible, so we had tea and a scone and watched tv. I find that if I ask mother what she thinks about anything she is unable to give an opinion or preference any more.
I think my concern also is that, while I was away for a few months in the summer, the current agency sent carers in, at my request, to help mother have a bath. This was mid morning once a week, as the only time that they could do, and it was not mums regular carer. Mum accepted it when I mentioned it initially, and did not voice any objection. However as the time approached (I phoned to remind her), she became increasingly bothered by it, and ended up simply saying that she would not let them help her, she could bathe herself. Ironically, as I had reminded her they were coming, she apparently when to the door with wet hair and said that she had just had a bath (how I don't know, but she can be very determined and resourceful when she wants to be). So all in all, it was a very stressful experience for both of us. I think my worry is that the same thing will happen when we change carers. The new agency think that the problem arose because the carers did not have time to establish a rapport with mum, and they were quite shocked that at the moment mum just has a 15 minute visit, as they said that for dementia patient's needs, it was really important to establish rapport, and that you need time to do so. They recommend a 30 minute visit for medication and welfare check as a minimum. They suggest that I ascertain from mum whether she would like a morning visit or an evening visit. I personally do not feel that she could answer that question, but I think that a morning visit (between 8 and 9) would work better as that is when mum habitually would wash or bathe, and then they could make sure she changes and prepare her for the day ahead (write up whiteboard with days events, and perhaps write a shopping list with her).

 

[Mannie]

My worry is that she accepts 'the eye drop lady' and is used to her coming everyday. Also, I like her too. In fact, I feel bad changing agencies because I have developped a friendship of sorts with the current carer who comes round every day, and the agency have never let us down. I do not want her to think that it is any reflection on her. Having said that, I'm not sure that mum has taken to her as much as I have. I think I will try to be there when the carer comes round tonight, to observe the interaction (although this may be different with me there too). My mother will not give any opinion either way on her carer. If I ask her a couple of hours later if she has been round, mum looks at me blankly and says 'I don't know'. But the new agency, after their initial visit, phoned me up and asked me what mum thought of them. Apparently they had expected me to enter into a discussion with her after they had left, to see what she thought of them. I explained that mum had not made any comment at all after they left (in fact I think she was quite worn out by the visit), and I had thought it best to make things as normal as possible, so we had tea and a scone and watched tv. I find that if I ask mother what she thinks about anything she is unable to give an opinion or preference any more.
I think my concern also is that, while I was away for a few months in the summer, the current agency sent carers in, at my request, to help mother have a bath. This was mid morning once a week, as the only time that they could do, and it was not mums regular carer. Mum accepted it when I mentioned it initially, and did not voice any objection. However as the time approached (I phoned to remind her), she became increasingly bothered by it, and ended up simply saying that she would not let them help her, she could bathe herself. Ironically, as I had reminded her they were coming, she apparently when to the door with wet hair and said that she had just had a bath (how I don't know, but she can be very determined and resourceful when she wants to be). So all in all, it was a very stressful experience for both of us. I think my worry is that the same thing will happen when we change carers. The new agency think that the problem arose because the carers did not have time to establish a rapport with mum, and they were quite shocked that at the moment mum just has a 15 minute visit, as they said that for dementia patient's needs, it was really important to establish rapport, and that you need time to do so. They recommend a 30 minute visit for medication and welfare check as a minimum. They suggest that I ascertain from mum whether she would like a morning visit or an evening visit. I personally do not feel that she could answer that question, but I think that a morning visit (between 8 and 9) would work better as that is when mum habitually would wash or bathe, and then they could make sure she changes and prepare her for the day ahead (write up whiteboard with days events, and perhaps write a shopping list with her).

From what you have said, your thoughts are quite sensible. If you are still feeling that you would like to verify then ask her GP to engage social services , to assess her care needs, then they can advise you.

That way. You will get a third person to advise you.

It is very difficult to take control, but likely that is what is needed.

 

[Dollydaydream1]

Refusing to accept help

Well I have been getting some support from an Admiral nurse, who suggested I keep the evening 'carer' that she is familiar with, and engage the other agency, with their dementia experience etc, to make a morning 30 minute visit. The problem is that I have spoken to my mother and is adamant that she needs NO help. She seems oblivious to all the support that I am giving her. What do I do? I can't force her to accept the carers. Do I leave her to her own devices which will mean sleeping in her clothes, not changing for days on end, and not necessarily washing or cleaning her teeth, and probably living off breakfast cereal and custard tarts. I am starting to get to my wits end with this. The new agency are due to start in 10 days time. Should I put them on hold or risk mum getting so upset that she will start refusing the help she currently has (home help once a week and 15 minutes medication daily)?

 

[Shedrech]

Hi Dollydaydream1
who knows what will actually happen; you won't unless you give it a go
so, personally, I'd keep to the arrangements you have made as if your mum will begin to co-operate, it will help her and you too
maybe think of any problems there may be and how you might prepare for them eg could the new carers say they are a friend of yours and the carer your mum accepts, and that you just asked them to pop in to say hello and give her a hand ... advise the new carers that your mum may be reluctant/unco-operative/refuse so that they know to go in gently, maybe just have a cuppa and chat with her to build up some acceptance, rather than racing in to get lots done and leave your mum in a whirl - maybe focus on one task to start with, so think what most needs to be done, or something your mum would enjoy - if the carers know you are OK with them gradually building up the care they may be more relaxed with your mum - after all, if they stay for a cuppa at least you know your mum has support for that time and someone to let you know of any concerns
best wishes

 

[Dollydaydream1]

Hi Dollydaydream1
who knows what will actually happen; you won't unless you give it a go
so, personally, I'd keep to the arrangements you have made as if your mum will begin to co-operate, it will help her and you too
maybe think of any problems there may be and how you might prepare for them eg could the new carers say they are a friend of yours and the carer your mum accepts, and that you just asked them to pop in to say hello and give her a hand ... advise the new carers that your mum may be reluctant/unco-operative/refuse so that they know to go in gently, maybe just have a cuppa and chat with her to build up some acceptance, rather than racing in to get lots done and leave your mum in a whirl - maybe focus on one task to start with, so think what most needs to be done, or something your mum would enjoy - if the carers know you are OK with them gradually building up the care they may be more relaxed with your mum - after all, if they stay for a cuppa at least you know your mum has support for that time and someone to let you know of any concerns
best wishes

Mmm, worth thinking about. The problem I can see straight away is that the carers will be in uniform, and there will be 2 or 3 of them. Difficult to tell her they are friends of mine in uniform. Also, I have already told her they come to look in on her neighbours who she knows are poorly. In my mums eyes, this makes no sense as, as far as she is concerned she can look after herself. Also, mum tends to be very withdrawn, and in her own world in new situations, and whenever she feels uncomfortable. I need to find a way for her to engage with whoever comes in, so that she feels comfortable and is receptive to their help. Otherwise the risk is that she will become hostile and not let them help her. I think I will give the agency a call tomorrow anyway, to explain my concerns and mum's reaction so far.

She also asked me how much it will cost and I told her, also explaining that she can afford it easily, however she is not happy about paying for something that she doesn't want. I think I should have told a white lie ( eg it's on the NHS, or a special free service for those with dementia), and I think I should also say it's doctors orders, or something along those lines, but too late now. I need to think about my next move. Maybe delay till after Christmas and then put it to her jn a different way. Also, there is another agency where they don't wear uniform - maybe that would be better? Oh dear, I don't think I'm very good at this role. It feels like play acting to me - never my strong point.

 

[parrotface]

Just be there and your company will mean the world to her. Remember she is still your mum, don't let the disease spoil your memories. I am sure there are days when you recognise her so make the most of them. As a mother with dementia this is what I would want my children to do and no doubt one day this is what they will have to do. Until then make the most of every day you have together and treasure the memories.


Sent from my iPhone using Talking Point

 

[Shedrech]

hi Dollydaydream1
don't do yourself down - there's a lot of learning involved in this caring lark (would that it were a lark, a spree ...) and you're right about the role playing; you get used to that too
so next time the costs are brought up either go with the flow if your mum has forgotten the previous conversation and say how wonderful it is that this is provided for people over (a year before her age) and that you just found out about it OR if she does remember, say you looked into it as someone else at work told you .... and do the free bit again - then add wouldn't you be daft not to take this up as you've paid all your life and you deserve some pampering now .... maybe even push it and say the people who come in are on a special scheme to get extra qualifications and she will be doing them a favour ... or something to make her feel she is important ?

you're doing just fine

 

[Dollydaydream1]

Just be there and your company will mean the world to her. Remember she is still your mum, don't let the disease spoil your memories. I am sure there are days when you recognise her so make the most of them. As a mother with dementia this is what I would want my children to do and no doubt one day this is what they will have to do. Until then make the most of every day you have together and treasure the memories.


Sent from my iPhone using Talking Point

This is lovely - thank you for sharing this.

 

[AlsoConfused]

If there are neighbours who look out for your Mum, then the carers being uniformed makes it easier for them to check whether anyone they notice is probably OK ... or up to no good.

I'm not so sure your Mum would worry too much about the carers being in uniform or not. What she's not going to like - for a bit, anyway - is these strangers coming into her "space" when she doesn't see any need for them to do so.

Would she accept the idea that they're friends of yours who haven't had time to change from their work clothes but are just dropping in?

And that as you're going to be away for a little while [next year? some time far distant from now?], you'd be a lot happier and less likely to worry if she knew your friends, liked them and could ask them to do any little jobs that one person on their own can't do so easily. Or perhaps the "friends" are good with email / Facebook (which your Mum isn't) so they'd be a resource to her if she wanted to get a message to you quickly.

 

[Dollydaydream1]

Feel sick about it all today

So the new carers were supposed to start on Wednesday. I was told by the lady who visited to put together mum's care plan that she would do the first session on Wed and would come round the day before to deliver the care plan. That seemed to be the best option as at least there would be a fighting chance that mum would remember who she was the next day. She said she would call nearer the time to let me know what time she would be round, however this afternoon I had still not heard, and so phoned up the agency. The lady called back and said it would not be her attending the first session, but another lady that mum has not met. Also, she appeared to have forgotten the plan to attend the day before with the care plan and for me to sign as Power of Attorney. When I persisted saying that I did not think this would work for mum having a stranger turn up on the first day without any introduction, she suggested we delay for 2 days and she will attend. Whilst this is a solution of sorts, it has left me feeling less than happy with the agency. Wouldn't it be a matter of policy that new carers would be introduced to their client in person, especially for a dementia sufferer? Think I need to seek more advice about this now, as I am worried that I will not be able to work with this agency. It feels as if it's down to me to get information out of them. I feel disappointed and let down that they are not better at communicating and more reliable ( no apology), or is this par for the course for care agencies? (The CQC report is good too, and I was happy with the lady when she originally visited mum). Oh dear why is everything so difficult? It's hard enough introducing new carers that mum doesn't want, without having this extra stress and uncertainty introduced at the last minute. Should I go ahead and give this agency a chance? They have been attending one of mum's neighbours for 4 years do maybe I should, but could really do without this extra worry. I'm aware that my stress is mainly due to my fear that mum won't accept them, and will get really upset.

 

[Dollydaydream1]

Today was a better day

On my husband's advice, I decided to introduce mum to the whiteboard that the carers will be using to help mum focus on the day's events. I was not feeling positive about how mum would receive it, but I went round first thing (830am), when mum is usually at her best...I found mum sitting in a very warm house, with her (fake) fur coat on, having just put a vegetarian lasagne in the microwave! She was wearing the same clothes as yesterday (and the day before), and had not cleaned her teeth or had a wash, although she said she had, but the dry flannels said otherwise. Anyway, the main thing was that she was cheerful. So I made us both a cup of tea, had a chat, got the white board out, and started to write the day ahead's activities on it. She seemed to accept this without protest. I then entered some new entries in her diary .'.....lady coming', to indicate when the carers are starting. I didn't mention this to her again, but as she reads her diary constantly, she hopefully will take it in to a certain extent. Left feeling more hopeful and positive than yesterday, and, most importantly, thinking that I had done my best. Let's hope the positive days continue...

 

[Dollydaydream1]

Update

I'm sorry to say that the new carers did not work out. Mum is very independent and does not accept help easily. In fact she has no understanding that she needs any help, and does not understand why they come round. Although she was supposed to have a 30 minutes visit, frequently the visit was far less than this, on some occasions it was 1 minute. I believe this may have been due to mum's resistance to them being in her space. On occasions she told them to go. After they had updated the whiteboard she would rub it off. After they had made the bed, she would un-make it. She gets up before they arrive, wearing the same clothes as the day before, and tells them she has already changed. She says she has washed when her flannels are all dry. I can understand she wishes to retain her independence, but if she would let them help her it would make life so much easier for me as I would not need to constantly worry and check up on her. It seems that she will only accept help from me, and yet I am not around half the year. It is such a worry. She will not let them shop for her although she has nothing in her fridge. She says she will heat up a frozen meal but has forgotten how to use the microwave. To me, it feels like she needs a companion that she accepts, with her all the time, to make sure she is washing, changing and eating properly etc. It feels like this should be me, but I am not in a place where mentally or practically I feel able to do this. However she is adamant that she does not want to go into a home. What do we do? Leave her on her own to fend for herself? She is happy, but as her condition progresses, is she putting herself at harm? It feels like I am leaving a child on her own at home. So, so difficult.

 

[Rosettastone57]

I'm sorry to say that the new carers did not work out. Mum is very independent and does not accept help easily. In fact she has no understanding that she needs any help, and does not understand why they come round. Although she was supposed to have a 30 minutes visit, frequently the visit was far less than this, on some occasions it was 1 minute. I believe this may have been due to mum's resistance to them being in her space. On occasions she told them to go. After they had updated the whiteboard she would rub it off. After they had made the bed, she would un-make it. She gets up before they arrive, wearing the same clothes as the day before, and tells them she has already changed. She says she has washed when her flannels are all dry. I can understand she wishes to retain her independence, but if she would let them help her it would make life so much easier for me as I would not need to constantly worry and check up on her. It seems that she will only accept help from me, and yet I am not around half the year. It is such a worry. She will not let them shop for her although she has nothing in her fridge. She says she will heat up a frozen meal but has forgotten how to use the microwave. To me, it feels like she needs a companion that she accepts, with her all the time, to make sure she is washing, changing and eating properly etc. It feels like this should be me, but I am not in a place where mentally or practically I feel able to do this. However she is adamant that she does not want to go into a home. What do we do? Leave her on her own to fend for herself? She is happy, but as her condition progresses, is she putting herself at harm? It feels like I am leaving a child on her own at home. So, so difficult.

Hi
Sounds like my MIL. In fact not needing any help in her eyes is normal for dementia. What I do for MIL is to keep the carers coming whether she likes it or not. Most of the time they are simply paid talking companions. We have told her it's all free anyway and the bills come to us as well. The agency have a plan but they are used to this kind of behaviour and often just make a cup of tea and chat. As her condition deteriorates the carers are then on hand to get things done rather than try and introduce all this at a later stage. The carers come in at lunchtime and go straight to freezer and put a meal in microwave to heat up whether she likes it or not. The food gets served up and they sit with her while she eats. If she doesn't eat it then fine but the care agency have done their job and your conscience is clear. Eventually MIL wasn't going to starve herself and now she accepts the routine. The carers wear uniform so as MIL begins to not recognise people she can recognise the uniform colour. I personally wouldn't worry about the bed not being made. MIL hasn't had her sheets changed for weeks. As for food shopping I make a list for MIL of what I think she needs then send it to carers to do.
I appreciate that if you're abroad then the shopping thing isn't so easy. In fact I'm currently in the USA at the moment and our arrangements so far have worked out well. What we found was that MIL has no initiative to tell me what she wants doing or not so you just have to take control. My MIL didn't care whether she was making things hard for us or not .