Home or care home

Marmar

Registered User
Aug 21, 2015
27
0
Wales
Hi TP,
I care for my father who has Alzheimer's diagnosis 2 years ago, believe he is in moderate stage, although he is good in that he can use the toilet and shower although he needs to be reminded to shower, and I make sure he eats properly.
The thing is I believe a person with dementia is better in familiar surroundings, being at home, why do we seem quick to put our parents in a home? I have experience that a person with dementia detioriates more when they are out of their familiar surroundings, my friends mother lasted two week in a care home. My father and mother took care of us and made sacrifices to care for us, other countries china, India etc care for their elderly, I will not easily jump to putting my father in a home, I hope with help from family and other carers I can keep my father at home till the end where he has memories of my mother/ his wife.
 
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Lorna44

Registered User
Jul 16, 2016
229
0
Surrey
My brothers and I didn't make the decision lightly, but even with carers and support my mother was still alone in her own home for a large portion of the time.... and in that time she was hallucinating and suffering from delusions. She would leave the gas on, she would wander, she would call the police claiming people were in her house, she would fall and forget to press her alarm, and lots of other things which jeopardised herself.
Even with all that support from carers and her family she was a danger to herself.
None of us are 'quick' to put our parents in a home, but to keep someone safe from harm, and to have them looked after without having a constant 24hrs a day worry of what they are doing, that's a HUGE thing.
I hope that you can keep your Dad at home with help, but please realise that I and others had to make a really hard choice for the best interests of our loved ones.
 

Rodelinda

Registered User
Jun 15, 2015
172
0
Suffolk
Hi - and welcome. You will hear from others with much more experience than me and many do manage to maintain their parent at home throughout this dreadful illness. But it's not always possible and there frequently comes a point when he or she has to move into a care home - and that isn't the end of the caring role for the family just that it moves into a different phase. You will see many threads on the forum where circumstances, in particular the well being of the person with dementia, dictate such a move.

I'm afraid that memories don't always last with dementia - my mother (who lives with me) now recognises very little (including me some of the time), she doesn't remember friends or most of the rest of the family and even all the things she shared with my father are rarely remembered (most of the time she recognises him in photos but I know that won't last). There will come a time when she will have to move from here - and that won't be because I don't care for her but because I do. I don't want her to stay here in a house that is impractical for her, with me becoming increasingly tired and worried: every time her door opens, we're on alert (and at night come down to check on her), at every meal I'm watching out to make sure she eats and drinks, I'm having to find tactics to get her to wash and put on clean clothes, I have to guess what the problem is when she's clearly not happy but can't express what's wrong etc etc. I have to cope with her increasing delusions and fears and certainly can't leave her in the house on her own even for 10 minutes for fear that she will fall, switch on the cooker and burn herself (or burn the house down) etc. She will then move somewhere that is set up to care for her 24/7, with trained staff, where the building is designed to accommodate her needs, where it's warm and safe and where she will see other people and benefit from that. As I say, others will have different views but believe you me, many of us on TP agonise over the decision to move a parent into care having to weigh up lots of competing emotions and practicalities. Sue
 
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Moonflower

Registered User
Mar 28, 2012
773
0
I didn't jump quickly into placing my mother in a care home, and to be honest I'm a little hurt by the comment. Most of us agonise over this and many people run themselves absolutely ragged trying to avoid it
My mother needed, and needs, far more care than I could provide. I lived 500 miles away from her, staying in her own home wasn't a safe option.
Even with her in care, I visit frequently, advocate for her, manage her financial affairs...it doesn't stop.
The cost to me and my family of supporting my parents over the last 15 years has been massive, emotionally and financially, My mother was retired by the time she was my age, I will need to keep working for many years to come and will have little by way of retirement savings. My kids missed out on holidays etc.
I don't grudge what I've done, but mum is now well cared for and getting the support she needs. At a vast self-funded cost
Please don't say that we are too quick to opt for a care home, it's hurtful, and not true.
Yes, in some countries there is less reliance on care homes, but there is more of a culture of extended families living close to one another, and for middle class families more availability of domestic staff to support. And for poor families no option but to keep people at home. Dementia care is not necessarily good in such places, please don't over-romanticise it.
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
Sue has put it very well. I managed to look after my OH until about three months before he died. By then he was having quite large tias and falling frequently, I couldn't lift him. I had looked after him for 10 years, meanwhile supervising a move, and a years worth of builders, as well as working part time until he could no longer be left alone.

Many carers assure their loved ones they will not put them into a home, but practicalities often win. I feel for those who have to run two houses, look after both children and parent, and work. It's just not possible, especially when sleep deprivation sets in!

Basically, no one puts people into a home if they have to. Being in a home is often the best way to care for someone, staff are at hand 24/7 to do what is necessary.
I feel it comes back to the old saying, do not criticise what I do until you have walked in my shoes.

If you can manage, fine, enjoy the journey. We are here to help.
 

Beate

Registered User
May 21, 2014
12,179
0
London
Please don't be so quick to judge other carers. You don't know their circumstances. No one makes this decision lightly. Carers who do, always feel guilty even though it's the right decision, and comments like yours don't help. It is not noble to keep someone at home when it's not in their best interests and will break the carer. Every person with dementia is different, and while some of them are easier to look after than others, there are also the ones that are aggressive, violent and resistant to any help, or have multiple medical issues. Those people need more help than one carer can give. 24/7 care is extremely stressful and needs the patience of a saint. In a care home this care is shared by numerous staff around the clock. I am sure if this was your father, you would want what's best for him, wouldn't you?
 
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Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Hi Marmar and welcome to TP.

I am sorry to hear your father has Alzheimer's disease.

I hope you will take advantage of any and all support that is available to you and your father, to make sure he gets all the benefits to which he is entitled and the appropriate level of medical care. Others here can better advise, as I'm not in the UK, but there's attendance allowance, carers allowance, council tax reductions or exemptions, day care, respite care, carers cafes, programs such as Singing for the Brain, the (In)Continence Nurse/clinic, OT support, and so forth. It seems what services are available depend to a great extent on where you live.

Also if you don't already have PoA sorted out, please do this immediately. You are going to need it and it's much harder if you wait.

My golden rule of dementia caring is to always accept all offers of help, immediately. No matter what kind of caring support you provide, but especially if you are a hands-on, live-in, 24/7 carer, you cannot do it all by yourself forever.

Also, if you are the only live-in 24/7 carer, what happens when you get the flu, or break your ankle, or need to go out of town? You need a respite/emergency plan in place.

There are many stories here on TP of people who have kept their PWD (person with dementia) at home for months or years, sometimes a parent, sometimes a spouse or sibling. In other cases, this is not how it works out.

Before you move in with your father, or he moves in with you, you might want to consider the physical layout of the house, to make sure it will be safe (above all) and practical for someone with dementia.

There is a lot of very good information on the Alzheimer's UK website about caring for someone with dementia. For example: https://www.alzheimers.org.uk/caring

I think the most important thing any of us can do, is to educate ourselves about dementia.

While I'm sure you meant no personal insult to those of us who do not care for our mothers or fathers or spouses or siblings or PWDs at home, and I am not going to justify myself to you or anyone else, there are reasons why residential care (care homes, nursing homes, etc) are chosen.

You may have the opinion that a person with dementia is better at home and in familiar surroundings, because you think they will deteriorate faster out of it. It is true that every person with dementia is a unique case and an individual. However, many of us have PWDs who are NOT better off at home, often for reasons of safety, resistance to care, distance from family, other medical issues that need to be managed, et cetera. In some cases, it's not possible.

Also, the "deterioration" that is often observed when a PWD moves to a care home, is usually down to the dementia, not the care home. Often it is only when the PWD is taken out of their familiar environment, that it is possible to objectively assess their level of function.

As I said, I won't justify myself to you or anyone else, nor would I presume to speak for the many carers here on TP, but before you are so quick to question why those of us with PWDs in residential care aren't caring for them at home (and I recognise that your question may have been rhetorical and may also have been expressing your understandable emotions regarding your father and his dementia), walk a mile in our shoes first, please.

And I would also direct you to have a read of Ann Mac's entire "So Bizarre" thread, which chronicles a family's exceptional attempt to keep a parent with dementia at home as long as possible, or Hilly Billy's "Becoming my Mother's Carer" thread, or any of the many similar ones.

Nothing about dementia is ever simple and easy, and I am sorry you find yourself in this situation. None of us want to be here. Best wishes to you and your family.
 

Leeds

Registered User
Sep 20, 2015
165
0
Hi Marmar and welcome to TP.

I am sorry to hear your father has Alzheimer's disease.

I hope you will take advantage of any and all support that is available to you and your father, to make sure he gets all the benefits to which he is entitled and the appropriate level of medical care. Others here can better advise, as I'm not in the UK, but there's attendance allowance, carers allowance, council tax reductions or exemptions, day care, respite care, carers cafes, programs such as Singing for the Brain, the (In)Continence Nurse/clinic, OT support, and so forth. It seems what services are available depend to a great extent on where you live.

Also if you don't already have PoA sorted out, please do this immediately. You are going to need it and it's much harder if you wait.

My golden rule of dementia caring is to always accept all offers of help, immediately. No matter what kind of caring support you provide, but especially if you are a hands-on, live-in, 24/7 carer, you cannot do it all by yourself forever.

Also, if you are the only live-in 24/7 carer, what happens when you get the flu, or break your ankle, or need to go out of town? You need a respite/emergency plan in place.

There are many stories here on TP of people who have kept their PWD (person with dementia) at home for months or years, sometimes a parent, sometimes a spouse or sibling. In other cases, this is not how it works out.

Before you move in with your father, or he moves in with you, you might want to consider the physical layout of the house, to make sure it will be safe (above all) and practical for someone with dementia.

There is a lot of very good information on the Alzheimer's UK website about caring for someone with dementia. For example: https://www.alzheimers.org.uk/caring

I think the most important thing any of us can do, is to educate ourselves about dementia.

While I'm sure you meant no personal insult to those of us who do not care for our mothers or fathers or spouses or siblings or PWDs at home, and I am not going to justify myself to you or anyone else, there are reasons why residential care (care homes, nursing homes, etc) are chosen.

You may have the opinion that a person with dementia is better at home and in familiar surroundings, because you think they will deteriorate faster out of it. It is true that every person with dementia is a unique case and an individual. However, many of us have PWDs who are NOT better off at home, often for reasons of safety, resistance to care, distance from family, other medical issues that need to be managed, et cetera. In some cases, it's not possible.

Also, the "deterioration" that is often observed when a PWD moves to a care home, is usually down to the dementia, not the care home. Often it is only when the PWD is taken out of their familiar environment, that it is possible to objectively assess their level of function.

As I said, I won't justify myself to you or anyone else, nor would I presume to speak for the many carers here on TP, but before you are so quick to question why those of us with PWDs in residential care aren't caring for them at home (and I recognise that your question may have been rhetorical and may also have been expressing your understandable emotions regarding your father and his dementia), walk a mile in our shoes first, please.

And I would also direct you to have a read of Ann Mac's entire "So Bizarre" thread, which chronicles a family's exceptional attempt to keep a parent with dementia at home as long as possible, or Hilly Billy's "Becoming my Mother's Carer" thread, or any of the many similar ones.

Nothing about dementia is ever simple and easy, and I am sorry you find yourself in this situation. None of us want to be here. Best wishes to you and your family.

I had to respond to this insensitive judgement of those carers,who make the difficult decision to choose a care home for their loved ones, when dementia becomes so entrenched that their loved one is not safe at home, despite an extensive care package. My dad was terrified at home, even when we were there, he had hallunications that people were in the house and they were going to harm him. Things were so bad that he considered harming himself to stop the torment. He would hide himself in the garage in the middle of winter to get away from his demons. His life was a misery. He is now in a lovely care home where he has made friends and can now feel safe with carers he trusts. His dementia has deteriorated, but he still tells us that he could have survived at home and he now feels safe. Our visits focus on his emotional wellbeing rather than his physical and personal needs. Every person in different and I use this forum for advice and support, not to be judged by other members. Leedsx
 

Tin

Registered User
May 18, 2014
4,820
0
UK
Do not want to upset you, but your believe that elderly people in China and India are cared for by family members, well, read this article that appeared in the BBC Magazine last year, you can google it - Who Will Take Care Of China's Elderly People - It is the same in India. It may be that decades ago all elderly people stayed within a family unit and that was the case here in the UK as well, no such thing as a Dementia care home. Only recently have the governments of China and India looked at this problem.

It is great that you intend to care for your elderly parent in own home, I am doing the same, but if and when the time comes when I can no longer care for my mum, then thankfully we in the uk do have the option of searching for a good care home, this itself is a problem for me, because I have this weird idea that no one can look after my mum better than me!
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Leeds, if I have offended you in any way, or you felt I was being judgmental, please accept a sincere apology. I am not sure which part of my quoted post upset you, but I am sorry. It was not my intent to express judgement, of anyone.
 

AndyL

Registered User
Sep 2, 2015
19
0
Feel a little insulted... I love my mum, but I know she would not want me to give up my life for her, when and if I have grandchildren of my own she would want me to spend time with them as she did with hers. I care for my mum who lives in her own home at present, but fully realise this may not be forever as her safety comes first. I also think sometimes caring for someone means you don't always spend the quality time with just them, you spend your life driving them to activities, to occupy their days/Drs appointments/ finding hearing aids/ organising finances/shopping/ making sure they eat/ take their medication/ tracking them on their GPS tracker because they have gone on a walkabout/ numerous phone calls from them at any time of the day. Trying to balance your life and family with caring for a parent is hugely difficult and if this means my mum going into a care home at some time in the future it will not be an easy option, but what I do know is my mum would NEVER want me to sacrifice or feel obliged to care for her at the expense of my children/grandchildren.... We all try our best, no decision is easy.... TP is a great place and I have learnt a lot from reading the posts, everyone's journey is different, there is not a right way or wrong way in the dementia journey. If you can find balance and sanity looking after your Dad till the end, then I am pleased for you.
 

min88cat

Registered User
Apr 6, 2010
581
0
Who said that we're too quick to put our loved ones into a home?
I find that comment a trifle unsavoury to say the least. Two years along the Dementia journey is no time at all. When the sufferer recognises you, their home and remembers their late partner, life isn't so bad. When they are so confused that they don't know who you are, don't recognise their own home, are afraid, anxious and having constant falls, I'm afraid common sense takes over and you realise that you cannot with the best will in the world,give your loved one the 24 hour care that they need, especially if you don't live near them. It took SS and the consultant to convince my husband that his mum needed 24 hour care. It broke his heart but he had to think of her well being. Within 2 weeks of being in the home, she felt safe and we could enjoy our visits to see her. We still 'cared' for her.

Please don't make such sweeping comments.
 

Missie 1956

Registered User
Oct 24, 2016
33
0
I am currently agonising with moving mum into care as I am unable to care for her at home. For the time being I have to work and am unable to give up for various reasons. It hasn't been an easy decision and the guilt is a burden to me. I just hope when everything is sorted the transition goes smoothly. I love and care for her but it just won't work. Don't need to feel any worse than I do already !
 

Lorna44

Registered User
Jul 16, 2016
229
0
Surrey
Missie 1956, beat that guilt monster with a big stick, we are all doing the best for our loved ones. Big hugs to you.
Thank you all for expressing so much better what I was trying to say, TP has been such a support to me during my mums move to a nursing home, thank you all. X
 

tigerlady

Registered User
Nov 29, 2015
427
0
Hi TP,
I care for my father who has Alzheimer's diagnosis 2 years ago, believe he is in moderate stage, although he is good in that he can use the toilet and shower although he needs to be reminded to shower, and I make sure he eats properly.
The thing is I believe a person with dementia is better in familiar surroundings, being at home, why are we seem quick to put our parents in a home? when I have experience of the person with dementia detioriating more when they are out of their familiar surroundings, my friends mother lasted two week in a care home. My father and mother took care of us all and made sacrifices to care for us, others countries china, India etc care for their elderly, I will not easily jump to putting my father in a home, I hope with help it's other carers I can keep my father at home till the end where he has memories of my mother/ his wife.

Absolutely no one is quick to put their parents into a home - it is even worse when its your husband or wife. More often than not, the decision is taken out of your hands by the mental health team for the safety of both parties. By the time my husband went into care, he did not recognise his own home, he rampaged about at night and then all day as well, wanting to go "home" and getting aggressive as well, or just going off down the road with a bundle of clothes under his arm - I was powerless to stop him. I had a breakdown. He would not shower or change his clothes, and often didn't recognise me as his wife. He also did not know his son or grandchildren. He has been in care for over 2 years now, and it breaks my heart, but he is safe and well cared for. They say he is happy and settled when I'm not there - I do seem to trigger the "going home" syndrome - but when I ask if he is happy there he says yes. He has got worse, but that is what the disease does. Gradually the memories go, the incontinence starts and other functions such as swallowing and language are lost as bits of the brain die. He often asks after his mum or dad - long deceased - or his brother who died when he was 20, but has no memories of our time together, although he recognises me as someone he knows.

It is a long hard journey looking after someone with dementia, and it does not stop when they go into a home - it is stressful and upsetting and there isn't a day goes by without me wishing I could have kept him at home.
 

Ihtl

Registered User
Jan 19, 2016
82
0
Like someone else has mentioned here, I know that my dad never would have wanted any of us to give up our lives for him and indeed, he and his siblings weren't in a position to/didn't want to do that for his mum.

My dad no longer recognises the home he's lived in for 28 years, he is frequently violent and aggressive, he stopped washing himself over 2 years ago and is now very resistant to personal care (from both family and paid carers), he has daily toilet accidents because he can't communicate that he needs to go and is very confused about what to do, and again, resistant to help.

Whilst he's certainly had it for longer, it is little over 2 years since he was diagnosed.

Daily life for myself has become a living hell. I deal with violence and aggression several times daily, have to clean urine and faeces from the floor/sheets/his clothes/his person, face the violence again when trying to wash him. He's too unwell to be left at home for more than 10 mins at a time (and only for an emergency).

Even with increased support, it'd be difficult for me to hold down a part time job, let alone a full time position, socialise, have a partner, ever have children of my own or anything else I might have wished to pursue.
 

notsogooddtr

Registered User
Jul 2, 2011
1,283
0
Good luck,it can be done if you have a lot of support and are able to be available 24/7 which is what is needed as illness progresses.I made the decision that both my parents would go into care homes,first Dad then Mum.It wasn't a quick decision and it wasn't easy.My parents were cared for at home by myself,my brother and my sister for several years.At the time both my brother and sister had young children,I thank God my family were grown up.My sister pre-deceased my parents.In the end none of the stress and worry made a difference,they deteriorated anyway and my mother was extremely miserable with her lot.Make your own decision by all means but don't be too quick to judge others.
 

pins tony

Registered User
Oct 20, 2014
213
0
bristol
home or care home

Hi TP,
I care for my father who has Alzheimer's diagnosis 2 years ago, believe he is in moderate stage, although he is good in that he can use the toilet and shower although he needs to be reminded to shower, and I make sure he eats properly.
The thing is I believe a person with dementia is better in familiar surroundings, being at home, why are we seem quick to put our parents in a home? when I have experience of the person with dementia detioriating more when they are out of their familiar surroundings, my friends mother lasted two week in a care home. My father and mother took care of us all and made sacrifices to care for us, others countries china, India etc care for their elderly, I will not easily jump to putting my father in a home, I hope with help it's other carers I can keep my father at home till the end where he has memories of my mother/ his wife.

I looked after my lovely wife June for years at home and I can assure you when she was sectioned and taken away under police escort it broke my heart and it's still broken.so don't assume that these decisions are taken lightly.you have a lot to learn about dementia memory loss is only a small part of this wicked decease I see my lovely wife June every day and miss her so much.take care
 

Wozzie

Registered User
Jul 12, 2016
536
0
Cheshire
After reading all your honest posts, it's made me understand a little bit more about this cruel disease
Mum is still at home - for the time being - but surely as you have all mentioned, her safety and health have to be priority.
We can't give her 24 hour care, so, when the time is right, mum will be looked after in a care home.
Marmar, please don't be too quick to judge those of us who've had to make this heartbreaking decision already.
We all do the best we can, and sometimes help with care is desperately needed.
Take care all
Anne
 

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