Mum has a lovely live-in carer, who tells us that activities that Mum enjoys, such as seeing visiting family (whom she mostly still recognises) or an outing to see a friend, are now often followed by one or several really bad days, when her physical and mental functioning plummets. Has anyone else found that this happens? I have no idea if there are ways to minimise the negative effects of these activities, such as spending a shorter time spent doing something, or seeing fewer people at a time. This may vary hugely depending on the individual, but has anyone got any experience to share? We don't want to deprive Mum of things she enjoys but nor do we want these to come at a harsh price.
Balancing activities with the bad days that follow
- Thread starter SarahC30
- Start date
That's a hard balancing act @sarahc. My partner who has vascular dementia is very tired most of the time anyway, so outings are less frequent and shorter. You just have to go with the flow and be prepared to cancel or scale down plans at the last minute if she really looks like she won't be able to cope. Last week for example she was fine having lunch out with her daughter on Monday and enjoyed her memory café on Wednesday morning, then started acting strangely on weds night and refused to go to her lunch club on Thurs, but was fine and fit for ice cream at the seaside on Friday. That was a particularly dramatic week admittedly.
Sorry I can't really offer much beyond the fairly obvious advice of taking each day as it comes and getting to recognise the signs.
Sorry I can't really offer much beyond the fairly obvious advice of taking each day as it comes and getting to recognise the signs.
Hi @SarahC30, I agree with @nae sporran that it really is a fine balancing act.
My husband loved his outings, visiting people, having visits and going out to various clubs but as you say, these can lead to bad days afterwards - which in our case was nearly always down to exhaustion or over-stimulation
I found that having alternate activity days worked best for us, allowing quiet 'at home' days in between. It didn't mean sitting at home staring at the walls - watchin a family film, pottering about in the garden or looking through magazines provided the right amount of relaxation. Even then, there were times when extra rest days needed to be given, depending on what activity had taken place and how tired it had left him.
We had to be very flexible and not make firm plans, it was more like having ideas pencilled in for certain dates, but accepting that on the day itself things might have to be watered down or even cancelled.
We did manage to strike a good balance overall though.
Edit: Just to add that limiting visits to a couple of folk at a time definitely helped avoid over-stimulation. We also used to limit time spent at things like bbqs and other gatherings so that my husband had the enjoyment of having been there without the stress of having to socialise for too long.
My husband loved his outings, visiting people, having visits and going out to various clubs but as you say, these can lead to bad days afterwards - which in our case was nearly always down to exhaustion or over-stimulation
I found that having alternate activity days worked best for us, allowing quiet 'at home' days in between. It didn't mean sitting at home staring at the walls - watchin a family film, pottering about in the garden or looking through magazines provided the right amount of relaxation. Even then, there were times when extra rest days needed to be given, depending on what activity had taken place and how tired it had left him.
We had to be very flexible and not make firm plans, it was more like having ideas pencilled in for certain dates, but accepting that on the day itself things might have to be watered down or even cancelled.
We did manage to strike a good balance overall though.
Edit: Just to add that limiting visits to a couple of folk at a time definitely helped avoid over-stimulation. We also used to limit time spent at things like bbqs and other gatherings so that my husband had the enjoyment of having been there without the stress of having to socialise for too long.
I find any over stimulation has a knock on effect later that day or the next. I try to limit visits to an hour and only one person at a time, this also stops people chatting to each other as if mum isnt there, as sometimes has happened.
Visitors may think this is harsh but its me that has to cope at 4.30am when mum is up and confused because her routine has been changed.
I now consider all hospital appointments carefully and weigh up the pros and cons, I cancelled a recent elderly care appointment as the previous one was just to chat to mum and as she has lots of other similar visits to the house I didnt feel there would be any benefit to her making the efforts to get dressed and travel etc ( mum is pretty much housebound now)
I also find the TV can be difficult for her, she often asks me to turn it off and she just sits quietly
Visitors may think this is harsh but its me that has to cope at 4.30am when mum is up and confused because her routine has been changed.
I now consider all hospital appointments carefully and weigh up the pros and cons, I cancelled a recent elderly care appointment as the previous one was just to chat to mum and as she has lots of other similar visits to the house I didnt feel there would be any benefit to her making the efforts to get dressed and travel etc ( mum is pretty much housebound now)
I also find the TV can be difficult for her, she often asks me to turn it off and she just sits quietly
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Another one here.
If it is too long travelling, too much going on, too noisy, too many people, or too long a time, it always resulted in a bad day (or two) afterwards. There is a balance needed, between doing things that she likes, and not getting too tired.
If it is too long travelling, too much going on, too noisy, too many people, or too long a time, it always resulted in a bad day (or two) afterwards. There is a balance needed, between doing things that she likes, and not getting too tired.
hi @SarahC30
your mum's carer is acting thoughtfully and responsibly in letting you know that your mum just doesn't appear to any longer have the physical and emotional energy to cope with the current level of activities and visits ... it can't be easy for her letting family know that maybe less would be better for youf mum ... so, to back her up, maybe make sure that anyone concerned knows that family are responsible for any new 'rules' you put in place and the carer is simply following your instructions, just so there's no awkwardness for your mum's lovely carer
your mum's carer is acting thoughtfully and responsibly in letting you know that your mum just doesn't appear to any longer have the physical and emotional energy to cope with the current level of activities and visits ... it can't be easy for her letting family know that maybe less would be better for youf mum ... so, to back her up, maybe make sure that anyone concerned knows that family are responsible for any new 'rules' you put in place and the carer is simply following your instructions, just so there's no awkwardness for your mum's lovely carer
Thank you, it is useful to hear others' experiences. Yes I can see that taking each day as it comes is important and I think we all need to make sure we do this now.
Thank you. I think we will need to rethink our visits - we're too far to go for the day, but that tends to mean two days in a row when we're doing things with Mum. Perhaps we just reduce the time spent with her and keep activities simple most of the time. Not sure how she's going to manage at the upcoming family lunch, where there will be lots of people, but perhaps a short time there is the key thing.
Absolutely but thank you for the reminder and especially about making it clear to others that these are family decisions. We think the carer is really wonderful and we do trust her and respect her judgement.
