Thinking of moving mom home from her Care home.

[manda17]

Hi Everyone,

I'm needing some advice!

My mom is currently in nursing home on 1 to 1 care for V Dementia, she is on 100mgs of Morphine every 12hours and Oramoph for break through up to 4 times when need. She is also on laxatives, Buscapan too.
NHS have been paying for her care due to the nature of her Dementia. Mom has progressed in her illness and has moved for mental health to nursing care. I have been waiting for them to contact me to let me know when I need to start paying for moms care. This 1 to 1 will stop in Feb. I'm concerned that no one will see when she is in pain and administer it in the time need.
Whilst mom has been in nursing care they have said her breathing is being surpressed and they have said it is due to the morphine. Her breathing has not changed since leaving in the mental health unit. The only thing that has changed is she is more settled as it is quieter.

I have very strong feeling for wanting to bring mom home and look after her myself.

Not sure how it would work with mom being on control drugs.
Has anyone got any advice please.
Mom has an amazing GP and Social working, but wanted any of your views first.

many thanks,

 

[VickyG]

Hi Everyone,

I'm needing some advice!

My mom is currently in nursing home on 1 to 1 care for V Dementia, she is on 100mgs of Morphine every 12hours and Oramoph for break through up to 4 times when need. She is also on laxatives, Buscapan too.
NHS have been paying for her care due to the nature of her Dementia. Mom has progressed in her illness and has moved for mental health to nursing care. I have been waiting for them to contact me to let me know when I need to start paying for moms care. This 1 to 1 will stop in Feb. I'm concerned that no one will see when she is in pain and administer it in the time need.
Whilst mom has been in nursing care they have said her breathing is being surpressed and they have said it is due to the morphine. Her breathing has not changed since leaving in the mental health unit. The only thing that has changed is she is more settled as it is quieter.

I have very strong feeling for wanting to bring mom home and look after her myself.

Not sure how it would work with mom being on control drugs.
Has anyone got any advice please.
Mom has an amazing GP and Social working, but wanted any of your views first.

many thanks,

Hi manda,

Forgive me for asking, but who would be caring for your Mum, would you be looking after her or would you be arranging care to come in at some point to support you and your Mum ? There are a lot of services out there and you would have full access to them.
In answer to your question re: the controlled drugs, again, your Mum would have the right to them, they would be administered via the District Nurse ( usually )

It's a wonderful thing to do, I did it, I took Mum out of care and she came here to live with myself and my family. We had her for 7 months. I didn't have any help of any kind, that was my choosing ( I have 15 years working experience of Dementia care) I knew what I'd singed up for, so for me, I coped. But it is hard, we're human after all. If you really want to do this, make sure you get the right support, because, at some point, you will need it.

Good luck and let us know what you decide

Vicky x

 

[manda17]

Hi manda,

Forgive me for asking, but who would be caring for your Mum, would you be looking after her or would you be arranging care to come in at some point to support you and your Mum ? There are a lot of services out there and you would have full access to them.
In answer to your question re: the controlled drugs, again, your Mum would have the right to them, they would be administered via the District Nurse ( usually )

It's a wonderful thing to do, I did it, I took Mum out of care and she came here to live with myself and my family. We had her for 7 months. I didn't have any help of any kind, that was my choosing ( I have 15 years working experience of Dementia care) I knew what I'd singed up for, so for me, I coped. But it is hard, we're human after all. If you really want to do this, make sure you get the right support, because, at some point, you will need it.

Good luck and let us know what you decide

Vicky x

Hi Vicky,

Thank you for responding.

I would be looking after mom at home with my family.
She has been in a EMI for over 2 years due to challenging behaviour and now her dementia has progressed she is nursing care and has been for 4 months. She has been end of life 3 times (72 hours) and is palliative care.

She sleeps alot. She does sit in her chair in the lounge for 4 hours a day and then returns back to her bed and sleep whilst in the chair and also in bed. Her waking hours vary, 3-4 hours in the morning and same in the late evening.
I am very hands on with mom whilst in the NH, i go every afternoon and stay until i feel mom is happy and content (which on occasions have been late evening and middle of the night) I shower her, change her pads/bedding use slide sheet to turn her every 2 hours, fluids and food and give her medication that the nurses have given me.

I understand it will be very hard work and challenging, but i also feel it will be rewarding.
She brought us up as children and i feel very strongly i should do the same for her.
The only downside I see at the moment is she has a great GP and if I take her home, I think i will have to change GP's.

Should I talk to her social worker and get some advice?

 

[VickyG]

Hi Vicky,

Thank you for responding.

I would be looking after mom at home with my family.
She has been in a EMI for over 2 years due to challenging behaviour and now her dementia has progressed she is nursing care and has been for 4 months. She has been end of life 3 times (72 hours) and is palliative care.

She sleeps alot. She does sit in her chair in the lounge for 4 hours a day and then returns back to her bed and sleep whilst in the chair and also in bed. Her waking hours vary, 3-4 hours in the morning and same in the late evening.
I am very hands on with mom whilst in the NH, i go every afternoon and stay until i feel mom is happy and content (which on occasions have been late evening and middle of the night) I shower her, change her pads/bedding use slide sheet to turn her every 2 hours, fluids and food and give her medication that the nurses have given me.

I understand it will be very hard work and challenging, but i also feel it will be rewarding.
She brought us up as children and i feel very strongly i should do the same for her.
The only downside I see at the moment is she has a great GP and if I take her home, I think i will have to change GP's.

Should I talk to her social worker and get some advice?

Hi again,

That's exactly how I felt, along with the fact that during the 8 years of her Dementia, I was there every step of the way, and so felt I had to see it through to the eventual end. Not so much out of 'duty' or anything like that, I just had to, I needed to ?

It seems that you very hands on, and would manage, but like I said, sometimes it's tough, draining, whatever you want to call it. For me, it wasn't about the actual care, I knew I could manage that ok,it was the emotional side of things, as time passes and your loved ones decline further, you have a whole range of emotions going on. Although that said, i'm glad I had Mum here when she passed away, I don't think I would of coped well with getting a call at 3 in the morning with the news !

Take care and keep us posted, sure you will make the right decision for your Mum and You xx

 

[VickyG]

P.s

There are other really good GP's out there I had to change Mum's when I brought her here, they were actually better than her previous ones, and yes, if Mum has a SW, then speak to them as they can help with OT items, and they are there for support for you too if you need them. Mum's SW team came out once here just to check for things like safety with the stairs etc, but Mum wasn't mobile, so wasn't an issue. The Incontinence nurse came out to asses Mum for pads etc ( she already had them, but they need to set up the order as no longer in the CH ).
Good luck, a lot to arrange, but in my opinion / situation, it was well worth it

Oh and also, if your Mum has a profile bed and pressure mattress, you should be able to take that as usually ( well in Mum's case) the bed is allocated to the person, not the home. Same goes for crash mats, slip sheets etc etc.

 

[Padraig]

Go for it girl, I did it when everyone told me it was impossible. I took my late wife from a NH when she was bedridden. Call it what you will: 'end of life', sorry I took no notice of stages etc, just accepted each moment as it came. It was the best action I ever took. So much for the experts telling me not to force feed her as she was dying, then sending me a palliative care nurse! For me it was a case of 'thanks but no thanks'. Surprise: she lived with a good quality of life for a further four years and nine months.
The power of love knows no boundaries. The best medication for a person with Dementia is to know and feel they are loved, wanted, not a burden. They may not be capable of speech but they still sense love up to the end.
I don't post much, I leave that to the more experienced and qualified.

 

[manda17]

P.s

There are other really good GP's out there I had to change Mum's when I brought her here, they were actually better than her previous ones, and yes, if Mum has a SW, then speak to them as they can help with OT items, and they are there for support for you too if you need them. Mum's SW team came out once here just to check for things like safety with the stairs etc, but Mum wasn't mobile, so wasn't an issue. The Incontinence nurse came out to asses Mum for pads etc ( she already had them, but they need to set up the order as no longer in the CH ).
Good luck, a lot to arrange, but in my opinion / situation, it was well worth it

Oh and also, if your Mum has a profile bed and pressure mattress, you should be able to take that as usually ( well in Mum's case) the bed is allocated to the person, not the home. Same goes for crash mats, slip sheets etc etc.

Hi Vicky,

Thank you so much for your advice, its good to hear others who have gone through the same situation. Really greatful.
We have a meeting on the 30th Jan with NHS Mental Health Team who will be handing mom back to Social Care. I will wait to hear what the have to say, but deep down I have made my descision.
I want mom home with me where she belongs!

 

[manda17]

Go for it girl, I did it when everyone told me it was impossible. I took my late wife from a NH when she was bedridden. Call it what you will: 'end of life', sorry I took no notice of stages etc, just accepted each moment as it came. It was the best action I ever took. So much for the experts telling me not to force feed her as she was dying, then sending me a palliative care nurse! For me it was a case of 'thanks but no thanks'. Surprise: she lived with a good quality of life for a further four years and nine months.
The power of love knows no boundaries. The best medication for a person with Dementia is to know and feel they are loved, wanted, not a burden. They may not be capable of speech but they still sense love up to the end.
I don't post much, I leave that to the more experienced and qualified.

Hi Padraig,

I think you are more than experienced to post more.
Thank you for sharing your journey. It's good to hear that going with my gut instinct is the right thing to do and she will get lots of love from the whole family.
x

 

[VickyG]

Go for it girl, I did it when everyone told me it was impossible. I took my late wife from a NH when she was bedridden. Call it what you will: 'end of life', sorry I took no notice of stages etc, just accepted each moment as it came. It was the best action I ever took. So much for the experts telling me not to force feed her as she was dying, then sending me a palliative care nurse! For me it was a case of 'thanks but no thanks'. Surprise: she lived with a good quality of life for a further four years and nine months.
The power of love knows no boundaries. The best medication for a person with Dementia is to know and feel they are loved, wanted, not a burden. They may not be capable of speech but they still sense love up to the end.
I don't post much, I leave that to the more experienced and qualified.

Hi
As manda said, you should post more ! You are more than experienced !
Hope you are well
x

 

[VickyG]

Hi Vicky,

Thank you so much for your advice, its good to hear others who have gone through the same situation. Really greatful.
We have a meeting on the 30th Jan with NHS Mental Health Team who will be handing mom back to Social Care. I will wait to hear what the have to say, but deep down I have made my descision.
I want mom home with me where she belongs!

Hi again

Good for you, i'm glad you have made your decision Good luck with everything, keep us up to date with how things go ?
And you're welcome, anytime. You can always message me if you want to.
Take care x

 

[Padraig]

If I were to post more I'd never be off the site. The boards are for carers for Loved Ones in the different stage of Dementia that have much in common. Over the years whilst caring there was no way I could spend time on a website. That would have been impossible as anyone that has cared 24/7 on their own at home can tell you, especially in the final six years.

Changes I learned to manage in my own way as the illness progressed were: Loss of speech, rigidity, loss of spatial awareness that resulted in falls, seizures, eating problems resulting in weight loss, 'wanting to go home', placing items in strange places, not knowing who I was, nor the stranger she saw when she looked in the mirror, hallucinating, eating problems, pressure sores, double incontinence for more than seven years, and being bedridden. I refused to accept she remain bedridden.

At no stage did she received medication for Alzheimer's and I managed most of the problems without medication. My education has been the 'university of life' and I've learned much more than I would have, had I'd had a conventional upbringing. Learning about Alzheimer's was the most challenging, but the most rewarding lesson of my life. I likened it in my book, to being presented with a large plain box containing a vast number of pieces of a jigsaw puzzle.
You see a long post with no information sorry, I never saw myself as a carer, but a husband for better or worst....

 

[VickyG]

If I were to post more I'd never be off the site. The boards are for carers for Loved Ones in the different stage of Dementia that have much in common. Over the years whilst caring there was no way I could spend time on a website. That would have been impossible as anyone that has cared 24/7 on their own at home can tell you, especially in the final six years.

Changes I learned to manage in my own way as the illness progressed were: Loss of speech, rigidity, loss of spatial awareness that resulted in falls, seizures, eating problems resulting in weight loss, 'wanting to go home', placing items in strange places, not knowing who I was, nor the stranger she saw when she looked in the mirror, hallucinating, eating problems, pressure sores, double incontinence for more than seven years, and being bedridden. I refused to accept she remain bedridden.

At no stage did she received medication for Alzheimer's and I managed most of the problems without medication. My education has been the 'university of life' and I've learned much more than I would have, had I'd had a conventional upbringing. Learning about Alzheimer's was the most challenging, but the most rewarding lesson of my life. I likened it in my book, to being presented with a large plain box containing a vast number of pieces of a jigsaw puzzle.
You see a long post with no information sorry, I never saw myself as a carer, but a husband for better or worst....

The University of Life has to be the best education ! It doesn't matter what we've been taught, what we learn from different training sessions etc, when it comes down to it, living it 24/7 and for many years, teaches you everything that it throws at ya ! I may have worked in Dementia care, but to go through it personally at the same time, you never switch off from it. That is why I gave up work and took Mum out of care and had her here. The best thing I ever did.
I commend anyone who can look after their loved ones, it's no easy task, and I think you did wonderfully Padraig, you should give chat sessions to people with very little understanding or knowledge, would you consider becoming a Dementia Friend ? ( if you haven't already )

 

[Padraig]

Vicky, During my 14 years in State custody from age 2 to 16 for an offence I did not commit, I learned not to place my trust in an adult. In recent years I discovered I was correct, for only till then I decided to research my background. The evidence contained in the official documents reveal so many untruths and plain lies I find remarkable no one was called to account.

Last night I had a surprise call from an investigative journalist in Ireland who has read some of my story and wishes to uncover more. She kept me on the phone for an hour and wishes to know more about me and the family who were denied all contact with me. The authorities considered to be in best interest of the child that all contact with relatives be severed
She was the journalist that investigated the bones of hundreds of children found dumped in a skip buried in a field. Discovered by kids playing when they raised a flag stone. I've sent her a copy of my book 'Alzheimer's Care My Way' and explained that I would not have been capable of caring as I did had it not been for a lack of nurture and understanding the meaning of love. My life began as a 'Lonesome Stray' till I met my wife. She became my whole life, my purpose, to love, cherish and protect till death. Once again I'm alone and most days I see no one, but I'm happy with wonderful memories of the most amazing life. We've lived in Holland, Germany, Belgium, Singapore, Saudi Arabia, and all over the UK. A true University of life education. Yes I'd consider becoming a Dementia Friend.

 

[jaymor]

You would make a great dementia friend Padraig, please join us.

 

[VickyG]

Vicky, During my 14 years in State custody from age 2 to 16 for an offence I did not commit, I learned not to place my trust in an adult. In recent years I discovered I was correct, for only till then I decided to research my background. The evidence contained in the official documents reveal so many untruths and plain lies I find remarkable no one was called to account.

Last night I had a surprise call from an investigative journalist in Ireland who has read some of my story and wishes to uncover more. She kept me on the phone for an hour and wishes to know more about me and the family who were denied all contact with me. The authorities considered to be in best interest of the child that all contact with relatives be severed
She was the journalist that investigated the bones of hundreds of children found dumped in a skip buried in a field. Discovered by kids playing when they raised a flag stone. I've sent her a copy of my book 'Alzheimer's Care My Way' and explained that I would not have been capable of caring as I did had it not been for a lack of nurture and understanding the meaning of love. My life began as a 'Lonesome Stray' till I met my wife. She became my whole life, my purpose, to love, cherish and protect till death. Once again I'm alone and most days I see no one, but I'm happy with wonderful memories of the most amazing life. We've lived in Holland, Germany, Belgium, Singapore, Saudi Arabia, and all over the UK. A true University of life education. Yes I'd consider becoming a Dementia Friend.

Wow,
I'm so glad you met your wife and had a wonderful married life.
Do it, I'm sure you will make an excellent Dementia Friend