End of life care at home.

[lauraine]

hello,
Is there anyone out there caring for their loved one at home in the last stages?
My husband who is 78 and diagnosed with Altzheimers 5 years ago has deteriorated drastically in the last 4 months from being able to walk in the park and feed himself to now when he can only just stand long enough to transfer from bed to chair, is needing total help with feeding, is doubly incontinent, sleeps nearly all day and only whispers the odd words. He occasionally opens his eyes and appears to focus on me or my daughter and will respond to cuddles.
My daughter comes in twice a day to help me change and wash him. I have a profile bed supplied downstairs and I sleep next to him on a foam guest bed. All through the night he is continually moving his legs up and down, twisting and turning and pulling his light duvet off. He shows no signs of being in pain. I try to keep his feet warm with small light blankets but often I wake to find his legs cold. Doctor suggested giving paracetamol at 6pm and 10pm but this had no affect. I feel he is still anxious when he needs to pass urine but he won’t use a bottle or commode as doesn’t understand where he is.
Has anyone any experience/tips on this.
Thanks

 

[Leedsloiner]

Hi Lauraine,

My sister and I looked after our mum in much the same way as you and your daughter. Unfortunately mum passed away last year. From our experience has your husband been checked for Urinary tract infection or could he be constipated? These are things that used to affect mum. She also had paracetamol, but the dose turned out to be too low. We used to put a hot water bottle with a furry cover in with mum this helped sometimes. Like you we slept at the side of mum, who was always comforted by this. You are both doing a great job looking after your husband at home. Take care x

Angela x

 

[saljak]

hello,
Is there anyone out there caring for their loved one at home in the last stages?
My husband who is 78 and diagnosed with Altzheimers 5 years ago has deteriorated drastically in the last 4 months from being able to walk in the park and feed himself to now when he can only just stand long enough to transfer from bed to chair, is needing total help with feeding, is doubly incontinent, sleeps nearly all day and only whispers the odd words. He occasionally opens his eyes and appears to focus on me or my daughter and will respond to cuddles.
My daughter comes in twice a day to help me change and wash him. I have a profile bed supplied downstairs and I sleep next to him on a foam guest bed. All through the night he is continually moving his legs up and down, twisting and turning and pulling his light duvet off. He shows no signs of being in pain. I try to keep his feet warm with small light blankets but often I wake to find his legs cold. Doctor suggested giving paracetamol at 6pm and 10pm but this had no affect. I feel he is still anxious when he needs to pass urine but he won’t use a bottle or commode as doesn’t understand where he is.
Has anyone any experience/tips on this.
Thanks

Hi Lauraine,
Well done, you and your daughter are doing a great job looking after your husband in his own home. Not easy. My husband is 68 and we've been coping at home for the past 5 years like yourselves.

We were able to cope because my husband was able to weightbear. Ten weeks age without any warning he suddenly lost the ability to stand. Over that weekend he went from weight bearing to being totally unable to do anything at all. My advice to you ( if you've not already done so), is to get your G.P to contact the district nursing team. Once you are known to the community team they will monitor the help you require and move in as soon as it's needed. Don't wait until something happens,( with this disease it's a case of when rather than if).

We've gone from being totally independent to having two carers four times daily, one visit during the night and now I've just been given a sitter twice a week to allow me some time to myself. This has given us the opportunity to stay in our own home yet have a wonderful care team to keep him safe and comfortable.

At this stage you really need to prepare for the future, hopefully it won't happen as quickly as with us but at least you'll be ready and therefore more prepared to cope.

hello,
Is there anyone out there caring for their loved one at home in the last stages?
My husband who is 78 and diagnosed with Altzheimers 5 years ago has deteriorated drastically in the last 4 months from being able to walk in the park and feed himself to now when he can only just stand long enough to transfer from bed to chair, is needing total help with feeding, is doubly incontinent, sleeps nearly all day and only whispers the odd words. He occasionally opens his eyes and appears to focus on me or my daughter and will respond to cuddles.
My daughter comes in twice a day to help me change and wash him. I have a profile bed supplied downstairs and I sleep next to him on a foam guest bed. All through the night he is continually moving his legs up and down, twisting and turning and pulling his light duvet off. He shows no signs of being in pain. I try to keep his feet warm with small light blankets but often I wake to find his legs cold. Doctor suggested giving paracetamol at 6pm and 10pm but this had no affect. I feel he is still anxious when he needs to pass urine but he won’t use a bottle or commode as doesn’t understand where he is.
Has anyone any experience/tips on this.
Thanks

 

[lauraine]

Hi Leedsloiner and Saljak
Thank you both for replying. Yes, my husband did indeed have a UTI shortly after he deteriorated and had Nitrofurantoin. He is back to eating ok and I keep his fluid intake good with jelly drinks as he has swallowing problems. He’s certainly peeing lots. Trouble is that he’s so restless at night that he always manages to pee round the edge of his pads. I have bought different designs of pads but all fail at night when he turns from side to side and is so active. Constipation is not an issue although not daily BA.
He often won’t weight bear now and we have to lift/swing him onto chair or wheeled commode. Even when he could walk he couldn’t use the toilet when taken there. Often I would get him there with difficulty up to three times in the night with no result only for him to wet the bed when back. He doesn’t understand where he is and can only let go when his bladder is virtually bursting. I still feel his night agitation may be because he needs to pass urine. He definitely has severe visual and perceptual problems, becoming very distressed and frightened of falling. Also he can’t understand what the commode is and won’t tolerate a bottle. Consequently I have just accepted that he will be wet for some hours in the night and sheets etc washed every day. He has very good wash in mornings and skin is fine, no pressure area problems. Unlikely bearing in mind how frequently he is moving!
What exactly do your carers do on their visits and how long do they stay? Also how do you get sitters? I was told I was entitled to 2 hours a week but later they said this was no longer available with the cuts. I think it depends where you live. I have just had a sitter arranged by a charity but I have to pay £18 per hour and it isn’t easy to relax for a nice long dog walk in the country when you know it’s costing £40!
Also, I have applied for the higher rate AA but have not yet received it. As we have bought a riser recliner chair, a wheel chair (which we have never used as got too poorly) and loads of incontinence stuff it will be very welcome! Is there a maximum rate for such frequent care visits?
I have had lots of visits from district nurses, OT,s and lots of other people until I am so confused. They are all very kind and offered help but I am not sure what help I would want. I expect that sounds silly!
Anyway thanks for reading all my rambling!

.

 

[witts1973]

Hi Leedsloiner and Saljak
Thank you both for replying. Yes, my husband did indeed have a UTI shortly after he deteriorated and had Nitrofurantoin. He is back to eating ok and I keep his fluid intake good with jelly drinks as he has swallowing problems. He’s certainly peeing lots. Trouble is that he’s so restless at night that he always manages to pee round the edge of his pads. I have bought different designs of pads but all fail at night when he turns from side to side and is so active. Constipation is not an issue although not daily BA.
He often won’t weight bear now and we have to lift/swing him onto chair or wheeled commode. Even when he could walk he couldn’t use the toilet when taken there. Often I would get him there with difficulty up to three times in the night with no result only for him to wet the bed when back. He doesn’t understand where he is and can only let go when his bladder is virtually bursting. I still feel his night agitation may be because he needs to pass urine. He definitely has severe visual and perceptual problems, becoming very distressed and frightened of falling. Also he can’t understand what the commode is and won’t tolerate a bottle. Consequently I have just accepted that he will be wet for some hours in the night and sheets etc washed every day. He has very good wash in mornings and skin is fine, no pressure area problems. Unlikely bearing in mind how frequently he is moving!
What exactly do your carers do on their visits and how long do they stay? Also how do you get sitters? I was told I was entitled to 2 hours a week but later they said this was no longer available with the cuts. I think it depends where you live. I have just had a sitter arranged by a charity but I have to pay £18 per hour and it isn’t easy to relax for a nice long dog walk in the country when you know it’s costing £40!
Also, I have applied for the higher rate AA but have not yet received it. As we have bought a riser recliner chair, a wheel chair (which we have never used as got too poorly) and loads of incontinence stuff it will be very welcome! Is there a maximum rate for such frequent care visits?
I have had lots of visits from district nurses, OT,s and lots of other people until I am so confused. They are all very kind and offered help but I am not sure what help I would want. I expect that sounds silly!
Anyway thanks for reading all my rambling!

.

Hi my mother has 4 care visits 1 for half and hour in the morning for a bed wash and pad change,the other 3 calls are pad changes and are 15 minutes in duration,I am a full time carer to her living on carers allowance which you or anyone else could claim if you offer 35 hours of care a week,I also claim income support,my mother has to pay all of the care fees as she has over the limit required for the L.A to step in,she pays £275 and that is for 2 carers at each call.
Have you been referred to your local continence team yet for pads,they will provide pads after a visit and you may have to make a drink diary for a week to look at your husbands volume to help choose choose pads,these will then be delivered in bulk.
Ask your GP to prescribe barrier cream to protect skin,there are different wash sprays like Pro shield foam cleaner for urine and faecal matter,another handy thing is a hair wash that we buy called Nilaqua as my mum now doesn't like water,although it's a wet shampoo you rinse by towel rather that having to use a shower,it's the best one I have come across,I pre wet my mum's hair beforehand with a spray bottle so we don't have to use so much shampoo,it looks great afterwards,I also googled for a visiting hairdresser and that was £14.I also ordered 100 good quality disposable bed pads from Ebay this week 60cm x 90cm for £24 delivered to save the bed sheets
When the district nurse last visited they ordered an inflated repose cushion that covered the whole recliner and she was the one that suggested that

 

[lauraine]

Hi my mother has 4 care visits 1 for half and hour in the morning for a bed wash and pad change,the other 3 calls are pad changes and are 15 minutes in duration,I am a full time carer to her living on carers allowance which you or anyone else could claim if you offer 35 hours of care a week,I also claim income support,my mother has to pay all of the care fees as she has over the limit required for the L.A to step in,she pays £275 and that is for 2 carers at each call.
Have you been referred to your local continence team yet for pads,they will provide pads after a visit and you may have to make a drink diary for a week to look at your husbands volume to help choose choose pads,these will then be delivered in bulk.
Ask your GP to prescribe barrier cream to protect skin,there are different wash sprays like Pro shield foam cleaner for urine and faecal matter,another handy thing is a hair wash that we buy called Nilaqua as my mum now doesn't like water,although it's a wet shampoo you rinse by towel rather that having to use a shower,it's the best one I have come across,I pre wet my mum's hair beforehand with a spray bottle so we don't have to use so much shampoo,it looks great afterwards,I also googled for a visiting hairdresser and that was £14.I also ordered 100 good quality disposable bed pads from Ebay this week 60cm x 90cm for £24 delivered to save the bed sheets
When the district nurse last visited they ordered an inflated repose cushion that covered the whole recliner and she was the one that suggested that

Thank you so much for all the information you have given me. That is really helpful. And I shall definitely get some of the products you have mentioned including the shampoo as that is a problem at the moment. I have filled in a input/output diary but no one has come back for it yet. As I