My old mum bedbound

missmouse

Registered User
Jan 19, 2012
51
0
Kent
Hello all I wonder if you can give any advice suggestions. I have posted before about my mother. After too long a stay in hospital she is bedbound. She has Parkinson's and Lewy Body. I want to make her life wonderful before she leaves me forever but as her dementia worsens I don't think I that is possible.

She doesn't take any medication for Parkinson's or LB. nothing seems to work on her. At the moment I have a physiotherapist once a week along with a carer to try and get her mobile but it is not working she still isn't moving. Apparently a hoist would be too big for her bedroom and as she lives with me it is not appropriate for her to be in a bed downstairs which she doesn't want it anyway. She has a stairlift but it isn't used as she can't walk too it. I want to take her shopping in her wheelchair in a minibus with other elderly people but her lack of strength and unhappiness are making this impossible. What can I do?l
 

Bedelia

Registered User
Dec 15, 2011
158
0
Hi, Missmouse

My sympathies. My mum (almost 90) has mixed Alz and vascular dementia and has been in residential care for nearly five years now (in a nursing unit since spring 2014). During that time, she has been bed-bound for long periods (about a year to 18 months from mid 2014 to spring this year).

She had become that way gradually, losing her independent mobility (walking very slowly with a stick/handrails), then needing a wheelchair to sit in the lounge during the day, then staying mostly in her room in the wheelchair or armchair, then bed-bound. Once she had reached that stage, it seemed impossible to me that she would ever improve at all, and I developed a routine of spending time with her just at her bedside.

Last Christmas, she suffered an acute health crisis (aspiration pneumonia) and had to be taken to hospital. I thought this was the end (the shock of being moved out of the home in itself would be likely to kill her); but in fact, after treatment with IV antibiotics and a period of further bed-bound fragility in Dec-Jan (where she needed feeding, too weak to feed herself), she rallied and has been able to spend days in the wheelchair in the lounge again - and even sit out in the garden for an hour or so a few times this summer, which she had not previously done since 2013 (her unit is on the first floor and when mobile she could not manage stairs and would not go in the lift; now she tolerates this in the wheelchair).

So I would say just take it slowly; you may feel it's terribly sad for her to be confined to her bed and not socialising as before, but if she is physically too weak even to be moved without a hoist, a shopping trip (with all the stress that entails) is probably too big a leap to aim for. For the moment, I wold suggest finding ways to entertain her quietly in her room - gentle music, non-stressful TV/radio, if she still enjoys that and is able to watch from her bed, perhaps reading to her or just sitting quietly alongside and making a bit of conversation.

I found that when mum was frailest, most things we take for granted to entertain us (narrative TV or noisy entertainment programmes) were too much for her. She just wanted to be quiet and peaceful. So I would concentrate on making the immediate environment as pleasant as possible - fresh flowers, perfume, nice toiletries, etc. Small treats to tempt the appetite - strawberries, slices of banana, cake in digestible portions, drinks in easy to handle cups.

Photos, if she still shows interest in these and they don't disturb her (my mum is sometimes confused or distressed by even precious family photos that she can't now place in context).

And then, if she gains some strength, progress gradually from bed to chair (with help and pressure-relieving cushion if immobile for long periods), ideally so that she can see out and maybe enjoy a view of the garden/birds, window box, plants. Then, if she's strong enough for that, in a wheelchair to other rooms in the house, and garden if accessible.

There's no point trying to engineer a bigger trip straight away, if she's not yet strong enough to enjoy it, as it will be stressful for both of you and may in fact set her back. Little steps. If a standard hoist is too big, investigate whether there's something smaller that you could get into the room to help lift her at least out of bed into an armchair or wheelchair.

Your company and these small comforts may be all she really needs or wants at the moment; and then if she gains strength by keeping up her bodyweight and recovering from any acute illness, she may gradually be able to return to a degree of wider socialisation.

I was very surprised my mum was able to go out in the lounge, let alone garden, this year, having been bed-bound for 18 months before. She is now back to spending most of the day in her room, as too much stimulation is tiring for her (and other residents sometimes annoy her! She likes her privacy); but she is still able to sit in an armchair and feed herself again to an extent (eating mostly with fingers and drinking from light beaker). Just take it slowly and set small goals; take your cue from her own mood.

All the best.
 

missmouse

Registered User
Jan 19, 2012
51
0
Kent
my old bedbound mum

Hi, Missmouse

My sympathies. My mum (almost 90) has mixed Alz and vascular dementia and has been in residential care for nearly five years now (in a nursing unit since spring 2014). During that time, she has been bed-bound for long periods (about a year to 18 months from mid 2014 to spring this year).

She had become that way gradually, losing her independent mobility (walking very slowly with a stick/handrails), then needing a wheelchair to sit in the lounge during the day, then staying mostly in her room in the wheelchair or armchair, then bed-bound. Once she had reached that stage, it seemed impossible to me that she would ever improve at all, and I developed a routine of spending time with her just at her bedside.

Last Christmas, she suffered an acute health crisis (aspiration pneumonia) and had to be taken to hospital. I thought this was the end (the shock of being moved out of the home in itself would be likely to kill her); but in fact, after treatment with IV antibiotics and a period of further bed-bound fragility in Dec-Jan (where she needed feeding, too weak to feed herself), she rallied and has been able to spend days in the wheelchair in the lounge again - and even sit out in the garden for an hour or so a few times this summer, which she had not previously done since 2013 (her unit is on the first floor and when mobile she could not manage stairs and would not go in the lift; now she tolerates this in the wheelchair).

So I would say just take it slowly; you may feel it's terribly sad for her to be confined to her bed and not socialising as before, but if she is physically too weak even to be moved without a hoist, a shopping trip (with all the stress that entails) is probably too big a leap to aim for. For the moment, I wold suggest finding ways to entertain her quietly in her room - gentle music, non-stressful TV/radio, if she still enjoys that and is able to watch from her bed, perhaps reading to her or just sitting quietly alongside and making a bit of conversation.

I found that when mum was frailest, most things we take for granted to entertain us (narrative TV or noisy entertainment programmes) were too much for her. She just wanted to be quiet and peaceful. So I would concentrate on making the immediate environment as pleasant as possible - fresh flowers, perfume, nice toiletries, etc. Small treats to tempt the appetite - strawberries, slices of banana, cake in digestible portions, drinks in easy to handle cups.

Photos, if she still shows interest in these and they don't disturb her (my mum is sometimes confused or distressed by even precious family photos that she can't now place in context).

And then, if she gains some strength, progress gradually from bed to chair (with help and pressure-relieving cushion if immobile for long periods), ideally so that she can see out and maybe enjoy a view of the garden/birds, window box, plants. Then, if she's strong enough for that, in a wheelchair to other rooms in the house, and garden if accessible.

There's no point trying to engineer a bigger trip straight away, if she's not yet strong enough to enjoy it, as it will be stressful for both of you and may in fact set her back. Little steps. If a standard hoist is too big, investigate whether there's something smaller that you could get into the room to help lift her at least out of bed into an armchair or wheelchair.

Your company and these small comforts may be all she really needs or wants at the moment; and then if she gains strength by keeping up her bodyweight and recovering from any acute illness, she may gradually be able to return to a degree of wider socialisation.

I was very surprised my mum was able to go out in the lounge, let alone garden, this year, having been bed-bound for 18 months before. She is now back to spending most of the day in her room, as too much stimulation is tiring for her (and other residents sometimes annoy her! She likes her privacy); but she is still able to sit in an armchair and feed herself again to an extent (eating mostly with fingers and drinking from light beaker). Just take it slowly and set small goals; take your cue from her own mood.

All the best.

Thank you so much your reply was lovely - I will take on board what you have said and I am going to print your reply out and digest it over a cup of tea in a moment it is really helpful thank you once again for your support and help.
 

Bedelia

Registered User
Dec 15, 2011
158
0
Thank you so much your reply was lovely - I will take on board what you have said and I am going to print your reply out and digest it over a cup of tea in a moment it is really helpful thank you once again for your support and help.

Glad if it helps. I have found over the years that there are no "right" answers to any of this (only trial and error to find what works for you), and needs change at different stages. Also it's all relative and sometimes we (family/carers) are perhaps more aware of the sadness of diminishing faculties than the person we care for, who is focused on the challenges of the moment.

When my mum went into care, I thought it was unbearably sad for her even to be confined to the home, instead of going out (e.g. for pub lunch, as we regularly did together until that time). (Shopping had already become too much, for both physical and mental reasons; sensory overload - noise, lights, crowds, pressure to move quickly - intense separation anxiety if I went out of sight for even a moment, and of course basic mobility).

So for the first few months I was very stressed trying to organise her to come out in the car for lunch on my visits, in order to keep up a semblance of our old social routine; but finally I realised that the disruption and distress caused to us both outweighed the pleasure of the trips, because mum had already got to the stage of finding the outside world disorientating and sometimes threatening.

I've written about it here (old post; things have moved on a great deal since then):

http://dementiajustaintsexy.blogspot.co.uk/2013/04/a-stranger-in-my-home-town.html

All the best.
 

sleepless

Registered User
Feb 19, 2010
3,223
0
The Sweet North
Glad if it helps. I have found over the years that there are no "right" answers to any of this (only trial and error to find what works for you), and needs change at different stages. Also it's all relative and sometimes we (family/carers) are perhaps more aware of the sadness of diminishing faculties than the person we care for, who is focused on the challenges of the moment.

When my mum went into care, I thought it was unbearably sad for her even to be confined to the home, instead of going out (e.g. for pub lunch, as we regularly did together until that time). (Shopping had already become too much, for both physical and mental reasons; sensory overload - noise, lights, crowds, pressure to move quickly - intense separation anxiety if I went out of sight for even a moment, and of course basic mobility).

So for the first few months I was very stressed trying to organise her to come out in the car for lunch on my visits, in order to keep up a semblance of our old social routine; but finally I realised that the disruption and distress caused to us both outweighed the pleasure of the trips, because mum had already got to the stage of finding the outside world disorientating and sometimes threatening.

I've written about it here (old post; things have moved on a great deal since then):

http://dementiajustaintsexy.blogspot.co.uk/2013/04/a-stranger-in-my-home-town.html

All the best.

Hi bedelia,

I just want to say how much your blog post resonates with me -- my late mum had vascular dementia, (passed away 2004) and my dad is now at end stage, aged 89, and so much of what you write brings back memories of how it was with both my parents when we were still able to go out for meals, shopping etc. and then gradually it ceased.
(I care for my husband who was diagnosed with Alzheimers' in 2003, and this is a different dementia experience to that with my parents.)

Thank you for posting the link.
 

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