I suppose it's like that film The Savages (bad title) with Philip Seymore Hoffman and Laura Linney taking care of their dad, the cynical son says the care home is done up nice to appease the offspring, make them feel less bad about things. I dunno, it's like two care homes I've been to have lovely old pics along the corridor - but who gets to see them? Not the residents, who are generally too stooped over as they walk along.
Yes, the care home is 'nice' when you see it but you are right Clive, most of the residents cannot enjoy that aspect.
My mum has not settled in. I went to see her yesterday evening and she pleaded with me to take her home. It is heartrending. She seems to continue to deteriorate mentally and is frightened. I know it is the Lewy Body Dementia. When she was with me she used to say that she was frightened alone here in the daytime. I hoped it would help for her knowing that there are people around at the nursing home but, sadly, that is too rational. I tried to talk to her about it but she just shouted at me. That is really out of character for her.
She also told me yesterday that one of the staff kicked her, twice. I cannot believe this is true. It would be so terrible if it was. I have visited several times and never seen anything suspicious.
Made worse yesterday because when my daughter and I were waiting outside room for her to be 'toileted', her neighbour came out and said she wanted to die and was thinking about slitting her wrists. Jolly.
My mum has not settled in. I went to see her yesterday evening and she pleaded with me to take her home. It is heartrending. She seems to continue to deteriorate mentally and is frightened. I know it is the Lewy Body Dementia. When she was with me she used to say that she was frightened alone here in the daytime. I hoped it would help for her knowing that there are people around at the nursing home but, sadly, that is too rational. I tried to talk to her about it but she just shouted at me. That is really out of character for her.
She also told me yesterday that one of the staff kicked her, twice. I cannot believe this is true. It would be so terrible if it was. I have visited several times and never seen anything suspicious.
Made worse yesterday because when my daughter and I were waiting outside room for her to be 'toileted', her neighbour came out and said she wanted to die and was thinking about slitting her wrists. Jolly.
Hi Choolgler,
Sorry to hear your mums not settling in, a big change and upheavall for all of you. Please don't dismiss what she says about being kicked it could simply be a misenterpretted accident? on the other hand it might be true? Would she previously have said something like this at home or for attention perhaps? If not then you must take this seriously. As for shouting at you, again you've said this is out of character and it must be difficult to work out if this is down to her illness or not. Chat to her neighbour, ask her why she want's to slit her wrists and what her experiences of living their are like. Turn up at different times of the day so you get to see different staff members and the homes routines. It is possible that there could be one bad apple/agency staff? that is upsetting the whole apple cart. Walk around the corridors pretend to be lost or looking for another visitor if you feel you need an excuse to see whats happening out of sight of the public.
I'm hoping for you and especially your mum that her distress is just down to the illness and that you get some support to help deal with this. The majority of nursing homes and staff in my eyes are absolute angels, kind and caring, but for your own piece of mind turn detective.
Wishing you and your mum all the best (your doing an amazing job)
Happy Christmas and a stress free peaceful New Year
Diane
Sorry to hear your mums not settling in, a big change and upheavall for all of you. Please don't dismiss what she says about being kicked it could simply be a misenterpretted accident? on the other hand it might be true? Would she previously have said something like this at home or for attention perhaps? If not then you must take this seriously. As for shouting at you, again you've said this is out of character and it must be difficult to work out if this is down to her illness or not. Chat to her neighbour, ask her why she want's to slit her wrists and what her experiences of living their are like. Turn up at different times of the day so you get to see different staff members and the homes routines. It is possible that there could be one bad apple/agency staff? that is upsetting the whole apple cart. Walk around the corridors pretend to be lost or looking for another visitor if you feel you need an excuse to see whats happening out of sight of the public.
I'm hoping for you and especially your mum that her distress is just down to the illness and that you get some support to help deal with this. The majority of nursing homes and staff in my eyes are absolute angels, kind and caring, but for your own piece of mind turn detective.
Wishing you and your mum all the best (your doing an amazing job)
Happy Christmas and a stress free peaceful New Year
Diane
The tip about the possibility of an agency nurse being the problem chimes with my experience when my mother had to go into a nursing home to get her out of hospital. She told me that the night nurse was in the habit of putting the pull for the help buzzer out of her reach. I also after a while realised that it was in fact Saturday mornings when I would find her bed absolutely soaking wet and realised that it was a particular nurse who turned out to be moonlighting and slept most of the night instead of attending to the residents. The nurse/manager was very pleased when I agreed to put our complaints in writing as the other residents were afraid to do so and armed with this he was able to get rid of this male nurse who was a pal of the owner. This would explain why the general atmosphere seems okay. There are thoughtless or just plain bad apples in any sphere. A friend of mine who has home carers was told by one of them that she ought to be grateful for them turning up at all!!amongst other remarks.
Hi Choogler,
I think people have to be very careful in the replies on this subject as some people may not be in a very good place to take such strong views having said that this is some of the real problems you get.
I certainly understand how you feel as my father had strokes over twenty years the first when he was only 41yrs and he had to go into a nursing home for the last 8years of his life.
My husband has had PD for almost 30years and is still only 68, we have had all sorts of problems to deal with not least some years before he was diagnosed I had injured my back nursing and had to give up work at aged 29 when our son was only 4years old. My husband was diagnosed when he was 39yrs and our son 10yrs, so Parkinsons has been a big part of our lives and still is even though he is now in a nursing home.
I can understand how everyone feels that you must do your utmost to keep loved ones at home and we certainly tried but it is not as simple as many may think, we went from managing on our own until I was on my knees, then getting help morning and evening to night sitters for two nights a week until full 24hour care when we had 80 different carer's over the next two years.
That was an extremely difficult time until eventually there was no option but a nursing home and believe me it is heartbreaking and continues to be so now 18months later. You have very difficult times as it is not what either would wish after being together for 48years, I am quite a strong person but not a day goes by without I wish it could be different and I keep doing the Euro lotto hoping that one day I win a big enough amount to be able to open a nursing home for people with PD.Even after thirty years it is still a battle to get staff of any sort to understand Parkinsons and because of the complications of having it for so long my husband is in a home 1 hour away from me there just isn't enough places to manage this complicated condition which is a great concern to me.
I only tell you this as there needs to be a greater awareness of the lack of suitable nursing homes for people with parkinson's. I know the national office is doing its best but everyone could write to their local MP and PCT, also take part in your local branch as we did as working together is a must and the branches need younger members to go forward.
It is a very true saying that until you experience for yourself you have no real idea what it feels like and believe me that is so true, Our son now has a complicated health problem and of course we can't tell my husband so we have many difficult years ahead and my concern is am I strong enough I hope so.
I am so glad that we have been a very close family and appreciated each other all our lives so I thank God for that.
I wish you all well and hope that I haven't gone on too long but sharing experience's is so important.
I think people have to be very careful in the replies on this subject as some people may not be in a very good place to take such strong views having said that this is some of the real problems you get.
I certainly understand how you feel as my father had strokes over twenty years the first when he was only 41yrs and he had to go into a nursing home for the last 8years of his life.
My husband has had PD for almost 30years and is still only 68, we have had all sorts of problems to deal with not least some years before he was diagnosed I had injured my back nursing and had to give up work at aged 29 when our son was only 4years old. My husband was diagnosed when he was 39yrs and our son 10yrs, so Parkinsons has been a big part of our lives and still is even though he is now in a nursing home.
I can understand how everyone feels that you must do your utmost to keep loved ones at home and we certainly tried but it is not as simple as many may think, we went from managing on our own until I was on my knees, then getting help morning and evening to night sitters for two nights a week until full 24hour care when we had 80 different carer's over the next two years.
That was an extremely difficult time until eventually there was no option but a nursing home and believe me it is heartbreaking and continues to be so now 18months later. You have very difficult times as it is not what either would wish after being together for 48years, I am quite a strong person but not a day goes by without I wish it could be different and I keep doing the Euro lotto hoping that one day I win a big enough amount to be able to open a nursing home for people with PD.Even after thirty years it is still a battle to get staff of any sort to understand Parkinsons and because of the complications of having it for so long my husband is in a home 1 hour away from me there just isn't enough places to manage this complicated condition which is a great concern to me.
I only tell you this as there needs to be a greater awareness of the lack of suitable nursing homes for people with parkinson's. I know the national office is doing its best but everyone could write to their local MP and PCT, also take part in your local branch as we did as working together is a must and the branches need younger members to go forward.
It is a very true saying that until you experience for yourself you have no real idea what it feels like and believe me that is so true, Our son now has a complicated health problem and of course we can't tell my husband so we have many difficult years ahead and my concern is am I strong enough I hope so.
I am so glad that we have been a very close family and appreciated each other all our lives so I thank God for that.
I wish you all well and hope that I haven't gone on too long but sharing experience's is so important.
Hi Choogler,
Your post could be my mum's story - almost to the word. I was a distance carer to my Mum who had Parkinson's and then developed Lewy Body Dementia. Mum lived in her own house with carers visiting, cleaners, meals on wheels, automatic pill dispenser, Parkinson's nurse visiting, Community Psychiatric Nurse visiting, district nurses visiting, every piece of sticking plaster we could think of to keep her in her house as she wanted. She still had capacity, so I didn't force the point of moving, and she had resisted moving closer to me. I knew that in the end a crisis would force the decision, and thus another fall and a night spent on the floor was the crisis.
She ended up in hospital; but the usual story of the inability to keep her 7 times a day PD meds given on time reduced her abilities, then acquiring pneumonia heralded her terminal demise.
My mum was lonely and isolated at home. Her carers and other visitors, apart from family, were her only contact with the outside world. I managed to find a lovely care home for her to go to, but sadly ultimately it was only for palliative care. She would have so benefited from the security and companionship of being in such an environment - so much better than struggling on physically and mentally hindered unsafe and vulnerable in her own home.
ROS is entitled to their opinion, but I would be interested to know if that is based on being a carer 24/7 for someone with dementia and PD? Social Services and PCT's do what they can to support people staying in their own homes, but that is limited by budget and reality. Families are not always numerous and living within easy travelling distance of a sufferer, or willing or suitable to do care. Living with an immobile person who is doubly incontinent, confused, erratic, and needs everything doing for them is no easy task unless you are able to give up everything else and live on a very tight budget with little income.
(I would imagine that there aren't many posts from those who are actually going through this process themselves as using the internet may be an impossibility, rather than no-one having a view?)
Please try not to beat yourself up over this decision, Choogler - you tried your best and did what you could within the limitations of being human. Until someone has walked in your shoes they cannot truly know how they would feel, or whether they would do things differently. Also everyone's story is different, the circumstances different. I would suggest you take a look at the Alzheimer's Society forum to read some of the stories there of how carers cope with living 24/7 with dementia - you will see that your experiences and feelings are shared by many. There are also some good tips on how to communicate with a person with dementia which might help you out when dealing with the "take me home" conversations.
You are right - it just is heartbreaking and very sad. If you get the odd good lucid moment make the most of it - any golden memories however brief are to be treasured. Good luck
Your post could be my mum's story - almost to the word. I was a distance carer to my Mum who had Parkinson's and then developed Lewy Body Dementia. Mum lived in her own house with carers visiting, cleaners, meals on wheels, automatic pill dispenser, Parkinson's nurse visiting, Community Psychiatric Nurse visiting, district nurses visiting, every piece of sticking plaster we could think of to keep her in her house as she wanted. She still had capacity, so I didn't force the point of moving, and she had resisted moving closer to me. I knew that in the end a crisis would force the decision, and thus another fall and a night spent on the floor was the crisis.
She ended up in hospital; but the usual story of the inability to keep her 7 times a day PD meds given on time reduced her abilities, then acquiring pneumonia heralded her terminal demise.
My mum was lonely and isolated at home. Her carers and other visitors, apart from family, were her only contact with the outside world. I managed to find a lovely care home for her to go to, but sadly ultimately it was only for palliative care. She would have so benefited from the security and companionship of being in such an environment - so much better than struggling on physically and mentally hindered unsafe and vulnerable in her own home.
ROS is entitled to their opinion, but I would be interested to know if that is based on being a carer 24/7 for someone with dementia and PD? Social Services and PCT's do what they can to support people staying in their own homes, but that is limited by budget and reality. Families are not always numerous and living within easy travelling distance of a sufferer, or willing or suitable to do care. Living with an immobile person who is doubly incontinent, confused, erratic, and needs everything doing for them is no easy task unless you are able to give up everything else and live on a very tight budget with little income.
(I would imagine that there aren't many posts from those who are actually going through this process themselves as using the internet may be an impossibility, rather than no-one having a view?)
Please try not to beat yourself up over this decision, Choogler - you tried your best and did what you could within the limitations of being human. Until someone has walked in your shoes they cannot truly know how they would feel, or whether they would do things differently. Also everyone's story is different, the circumstances different. I would suggest you take a look at the Alzheimer's Society forum to read some of the stories there of how carers cope with living 24/7 with dementia - you will see that your experiences and feelings are shared by many. There are also some good tips on how to communicate with a person with dementia which might help you out when dealing with the "take me home" conversations.
You are right - it just is heartbreaking and very sad. If you get the odd good lucid moment make the most of it - any golden memories however brief are to be treasured. Good luck
Hello to all those who have replied to my original post and others who may be reading the thread.
Mum has settled in a bit but it is still a struggle and I too do Euromillions. Setting up a home specifically for PD/LBD sufferers is a great idea.
It helps to know that my experience is shared - although it is also sad that so many have to go through this.
Recently went to see a panto in which Dame Edna, in a dress with an octopus applied to one shoulder, sang 'Spread a Little Happiness'. It was a very cheerful moment and we have to cling on to these!
Best wishes to you all.
Mum has settled in a bit but it is still a struggle and I too do Euromillions. Setting up a home specifically for PD/LBD sufferers is a great idea.
It helps to know that my experience is shared - although it is also sad that so many have to go through this.
Recently went to see a panto in which Dame Edna, in a dress with an octopus applied to one shoulder, sang 'Spread a Little Happiness'. It was a very cheerful moment and we have to cling on to these!
Best wishes to you all.
Hi to the Choogler,
I feel so very much for you!
Your head must tell you there was no other way but your heart is telling you something else and you hurt!
Bonds form between the patient and the family/carer and suddenly they are broken
(nobody's fault/no other way).
You had good advice: keep a close eye on the way the care home operates.
Visit your mother as much as you can, sit with her, talk to her, bring her good news of the family. Complain if you see they do not treat her properly.
It is an unfamiliar environment for your mother, she needs to know that she is not abandoned. She needs your protection and love. Remember we only have one mum!
Try to look after your health too, dear Choogler to be up to the hard task!
All my love!
Natasha
I feel so very much for you!
Your head must tell you there was no other way but your heart is telling you something else and you hurt!
Bonds form between the patient and the family/carer and suddenly they are broken
(nobody's fault/no other way).
You had good advice: keep a close eye on the way the care home operates.
Visit your mother as much as you can, sit with her, talk to her, bring her good news of the family. Complain if you see they do not treat her properly.
It is an unfamiliar environment for your mother, she needs to know that she is not abandoned. She needs your protection and love. Remember we only have one mum!
Try to look after your health too, dear Choogler to be up to the hard task!
All my love!
Natasha
Never fear Choogler,you have done everything humanly possible for your mother.
You must have a good heart - remember that.
You must have a good heart - remember that.
Do you have lots of items in her room that maybe she can relate to? Old photos and so on.
On a more prosaic note, folk should get their mum or dad's clothing labelled ie name tagged before going into a care home. They use an on-site laundry of course and stuff goes missing.
Go to a local school outfitter for name tags you can sew on, usually 50 for a fiver. Then go to a sympathetic dry cleaner to get them sewn on. mention it's for a care home situation. You can get quite fancy name tags in copper plate writing in any colour within reason, so it can look quite stylish on some items of clothing, lest you think it's a grim reminder of an upcoming plight.
I realise some of you reading this may want to stave this off, but even so it's good to get going on it, and of course any hospital stint could see items of clothing go missing too, so you may need them for a temporary leave of absence
On a more prosaic note, folk should get their mum or dad's clothing labelled ie name tagged before going into a care home. They use an on-site laundry of course and stuff goes missing.
Go to a local school outfitter for name tags you can sew on, usually 50 for a fiver. Then go to a sympathetic dry cleaner to get them sewn on. mention it's for a care home situation. You can get quite fancy name tags in copper plate writing in any colour within reason, so it can look quite stylish on some items of clothing, lest you think it's a grim reminder of an upcoming plight.
I realise some of you reading this may want to stave this off, but even so it's good to get going on it, and of course any hospital stint could see items of clothing go missing too, so you may need them for a temporary leave of absence