Home or care home

[BR_ANA]

Marmar

I've read your previous posts. Do you think that you just visiting your dad several times a day is enough? Do you think he is safe while he is outdoors knocking neighbours door?

BTW, I've never been on India however on Brazil law it is said you must care for elders. But it is common elders being treated as a unwelcome nuisance by family.

 

[Tin]

Marmar

I've read your previous posts. Do you think that you just visiting your dad several times a day is enough? Do you think he is safe while he is outdoors knocking neighbours door?

BTW, I've never been on India however on Brazil law it is said you must care for elders. But it is common elders being treated as a unwelcome nuisance by family.

Earlier when I suggested that Marmar read the article about elderly care in China, I wanted to add something about how the care is in family homes, but for fear of stereo typing certain countries, I did not. I am so pleased you have made the point for me.

 

[Florence.]

Home or care home

This post was bound to stir up a lot of emotion amongst carers particularly from those who have already made the heart breaking decision to have to see their loved ones go into care and hard for those of us who know we may all be faced with this decision and dread the day. Everyone's story is different, everyone's experiences different but again, sometimes similar in some respects. It touches raw nerves. I'm struggling to care for my husband at home, my closest friend did the same and got so low looking after her husband with Alzheimer's at home that when she got a cold sepsis struck, it killed her and he went into care, which is what she had fought against for so long, wrongly I thought. My sister in law couldnt take the decision for permanent care for her husband, he attacked her with a knife and she ran for her life. he was sectioned immediately and never came home. None of us wants to take the awful decision, sometimes it's just taken out of our hands but even so, it's never taken lightly and has broken many hearts,and will continue to do so.

 

[Linbrusco]

Marmar, while it is true my Mum was best at home in familiar surroundings as evident when my sister took her & my father away for a weekend, to give me a break from caring, towards the end even her own home, and indeed my father were not familiar to her.
My father contributed to Mums dementia misery, as he had no idea... absolutely no idea. Leaving her alone,and compromising her safety.
She had other health issues which had a knock on effect with her Alzheimers.
After 3 years of struggling at home, my Mum went into care 3 months ago.
For her it has been the best thing ever. It was still a very hard decision to make.

You will find that countries like India & China, and indeed in the South Pacific, countries like Samoa, Tonga and Fiji, multiple family members live in the one home to care for one another. Several generations live under one roof. There is also no welfare system or even care system.

In saying that, in New Zealand and in our news lately, we have many immigrants from China, who after completing their residency requirements get NZ Citizenship.
As China had a one child policy, that then allows them to get their parents to emmigrate to NZ under a Family category,
Once their parents have emmigrated to NZ, the children then move to Australia using their NZ Passport, leaving their parents behind to fend for themselves pretty much, sending money back to support them financially only.... so in that respect, it seems it is only lack of choices/money in their home country that necessitates them to take care of their parents/grandparents?

 

[love.dad.but..]

Your post is harsh and insensitive to those of us who tried desperately for a long time to manage the challenges of caring for the pwd loved on as they declined into the depths of this vile illness. Initially I hoped that dad would never have to be looked after in a care home after mum died suddenly at home and he was already in moderate stage, 10 months later of living with dad in his home 24/7 after the shock of mums death hastened his dementia and with an understanding husband it was very difficult and as much as you think atm you can handle all the problem behaviour thrown at you, in practice 24 hours of dads pacing, coming to my bedroom 30 times a night, peeing and pooing in places he shouldn't because he couldn't recognise a toilet, refusing any personal care, verbally aggressive, stopping him from wandering from the house, keeping him fed and safe etc the list goes on as they move into the advanced mental stage. I tried live in care after that in my desperation to keep him in his own familiar home but the care was shocking lacking in basic dementia expertise, husband diagnosed at the same time with a terminal illness requiring ongoing chemo so having dad living with us was too high an infection risk as dads hygiene awareness and compliance was zero so wasn't possible. So...walk in our shoes when it gets very tough and see if you still feel the same. Everyone forever carries the guilt that you have just reminded us all of, that shows that actually how deeply we care and having the courage to make the care decision in the best interests of the pwd to get the expertise they need is one of the hardest decisions ever. Please remember none of us know each other's trauma or background which brought us to make that decision after trying so hard and going against every instinct we have. Please read through some of the agony of the TP posts. If you are lucky that your dads care is manageable and can take him to end of life at home, good for you, but for many of us it isn't that simple. We all use and contribute to TP to seek advice and encouragement and to give back the same from our experiences, if anyone is having to make the care home decision, others totally understand please go with the decision.

 

[jaymor]

For all those who have parents, spouses or any other member of the family living in care, please stop feeling guilty, feel the sadness but not the guilt.

Guilt is for those who have not cared.

 

[nannylondon]

For all those who have parents, spouses or any other member of the family living in care, please stop feeling guilty, feel the sadness but not the guilt.

Guilt is for those who have not cared.

Well said Jaymor, I think the person who started this thread was probably posting without thinking about how they would upset so many people, none of us have any idea what so many carers go through before they make the decision that we can no longer care at home, this doesn't mean we no longer care for our loved ones we made the decision because we care so much.

 

[Jessbow]

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.

2 Years in, you have hardly started.

in 5 years time, when perhaps you'll see behaviour that you will simply not be able to manage at home, when he can't wont or swears blind he HAS showered, and he's soaked through with urine ( and worse) , when he shouts at you to get out of his house as you have become a stranger, Swears blind he was never married and that you cannot possibly be his child...Rampages around the house in the dead of night, perhaps you will then understand why some of us very reluctantly put our loved ones into care homes

 

[RedLou]

Re the OP - my father retired abroad, refused to return to the UK and I had to compromise my job to keep flying out to try to keep him 'independent' and in the end the authorities refused to let him return home. I suffer from guilt about this, even though that is pretty illogical. There are many different experiences of dementia caring on this board.

 

[Marmar]

Home or care home

To all on TP,
I am sorry to all carers for my post, on home or care home, I didn't mean to come across judgemental, I know all circumstances are different, I want to try and care for my father in his own home as long as possible, and it worries me that I may have to make the decision that a care home is the best option, the reason I mentioned in the first place about home or care home is, that when my father was first diagnosed with Alzheimer's, I made the decision to give up my full time job to care for my father, my father is getting more forgetful but overall is managing with my help, but social services when they first came to give my father a care assessment, they said at the meeting he could go into a care home or have full time care in his home for £800+ pounds a week, which I said no.
My father in law had dementia for 15 years and his wife cared for him at home, she was 75 years at the time, she had carers 4 times a day, and all the equipment she needed to help with his care, my mother in law also said there was no medication back then to slow the dementia down, so with social services quick to make the assumption to put my father in a care home, hence the reason for my post, I hope I can be as my mother in law and care for my father as long as possible in his own home.
Sorry again to all didn't mean to offend anyone, I know how hard it is sometimes.

 

[Shedrech]

Hi Marmar
I wonder whether someone in your life is putting some pressure on you, and you came to TP to share your own feelings on your own present situation - which is what TP is here for

We all have a lot to learn about living with dementia in our lives - a lot of tough decisions to make along the way - much heart ache - and eventually loss

We each walk a similar path but not the same path - we have hopes at points on the journey that sadly have to be set aside at a later point through no fault and deserving no blame but always with sadness and some guilt, never easily

I hope you are able to support your father as you wish and have him remain safely and well cared for in his own home; I doubt any would disagree that this would be the scenario we all hope or hoped for - it may turn out that way for you; it may not - my motto with dad (who I helped stay in his home for quite some time, and now visit in his care home) is expect the unexpected - everything I do for him I do as well as I can and in his best interests; I'm sure it's the same for you

best wishes to you and your father

 

[Tin]

Marmar, I may have misunderstood your update post, but why did you say no to £800 per week for care in own home? Was this some form of benefit? If someone offered me that amount of money I would grab it asap. Again, may have misunderstood, I am feeling a little tired, busy day.

 

[Marmar]

Marmar, I may have misunderstood your update post, but why did you say no to £800 per week for care in own home? Was this some form of benefit? If someone offered me that amount of money I would grab it asap. Again, may have misunderstood, I am feeling a little tired, busy day.

Hi Tin,
The social services was suggesting my father pay the £800+ a week, I live two miles from my father, and am the eldest of five, my eldest brother was the one who said I was the best person to care for my father full time, with their help.

 

[Leeds]

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.

Hi, sorry, no offence from you just the OP at the start of the thread leedsx

 

[Beate]

And I'm guessing no one pays you £800 a week for your caring? It's always great when someone elects you to do a job they don't want to do themselves. "Really, you're so good at that!" What a cheek your brother has. Did Social Services also have other ideas like day care or respite for you, or was that the extent of their involvement? Is your father self-funding? Is he getting Attendance Allowance and are you getting Carers Allowance at least?

You do know you have a right to a carers assessment for yourself? And that while it's good of you to want to keep your father at home as long as possible, no one can force you or should guilt-trip you into caring on your own, least of all your brother. Did SS just make a suggestion regarding the possibility of a care home or did they assess him as needing one? Because trust me, they don't do that lightly, especially if they might have to pay towards it.

Rereading your post, I think you're sounding out what's best for you and your father, so please take comfort from the fact that a care home is not always the worst option, and you should not break yourself in half just to avoid it. There are people who positively thrive in a care home environment. Granted, others don't, but we're all individuals, and we all need proper support. I care for my OH at home but I could not do it without his day care centre and sitters from Age UK. I would not have a life without them, and my OH loves his Day Centre. The people there are wonderful.

 

[Witzend]

The vast majority of us do not take the care home decision at all lightly. It's usually when the person has come to need 24/7 care and supervision - by which I mean someone on hand ALL day, ALL night, 365 days a year. This may often become very difficult or impossible to provide at home, once the person is no longer safe to be left alone at all; when they may be up and down half the night, banging and shouting and wanting to go out at 2 am, so that carers hardly ever get anything like a reasonable night's sleep. Not to mention when the matter of incontinence arises, or any of the other more challenging aspects of dementia.

As for people in other countries keeping their relatives at home, well, in many cases they very likely have no choice. However, we have Indian friends, in Mumbai, who did keep an elderly relative with dementia in her own home for several years - but they did not care for her themselves. . They provided two full time live-in carers - an arrangement which is infinitely cheaper and easier to arrange in India - and I dare say in many other countries where labour is cheap and plentiful - than it would be here. My friend assured me that such an arrangement is common, and equally that care homes are not at all unknown - for those who can afford them.

I mentioned to her once how we in the UK are often berated by politicians and others for putting our relatives in care homes when 'people in other countries care for their relatives themselves'.
Her response was to assure me that in India, at least, anyone who can afford to do so is more than likely to employ someone else to do it.

 

[Georgina63]

Hi Marmar, welcome to TP.
The decision about how best to look after parents is a difficult one and I don't think there is a right or wrong answer, just what is right for you and your situation. My folks were both diagnosed in 2014 with AD and I did all in my power to support them living together in their home as I believed that to be their wishes, and where was best for them during that time. We managed this for 2 years, and it as a rocky road to say the least. In August the balance tipped and living at home was no longer sustainable, mum was frightened, agitated and unsafe. They are now in a care home together, calm, safe and settled. It's hard, but they have adapted so much better than I could have imagined. I never thought this is how things would pan out, but when I think about the alternatives (living at home or with me), neither of those is realistic. They are in the best place at this point in time, given the progression of their dementia. It's very difficult to predict the future and in some repspects easier to focus on each day as it comes, but I guess the bottom line is that the nature of dementia means that this won't get any easier. Hope all works out for you and your family. Gx

 

[Marmar]

Marmar

I've read your previous posts. Do you think that you just visiting your dad several times a day is enough? Do you think he is safe while he is outdoors knocking neighbours door?

BTW, I've never been on India however on Brazil law it is said you must care for elders. But it is common elders being treated as a unwelcome nuisance by family.

Hi ana,
I spend all day everyday with my father, and my other three siblings come and stay weekends, I am not judging carers that have made the decision to put their loved ones in care homes, I hope I can care for my father as long as I can in his own home, in reply to all who have commented, to my post, social services gave me the option of putting my father in a care home, or having a live in carer for £800+ pounds for a week, my father paying for this himself, this was in march of this year, and although my father needs reminding to shower and eat properly, and he repeats himself often, I feel my father isn't bad enough to leave his own home, hence my post mentioning why so quick to put in a care home. I am sorry for not explaining properly my reason for my post, I am sorry for offending so many, it wasn't my intention, I know everyone's circumstances are different, my intention wasn't to judge any carers decision to put their loved one in a care home. My father has good and bad days, at the moment things are good, maybe it is my way of trying to shut out the thought that one day I may need to make the decision of a care home, but I hope I can be like my mother in law and care for my father in his own home until the end, this disease is so cruel, and we wouldn't allow an animal to suffer, I hope, my father will pass away peacefully in his own familiar surroundings.

 

[love.dad.but..]

Marmar..I hope you can fulfil your wish and hope to care for your father in his home. It is unfair of the brother to load everything onto your shoulders, do please make sure you get support and claim everything you and your father are entitled to. Perhaps it was unfortunate the way your first post was presented and a little more background as in your subsequent post may have helped. Whilst cannot be proved it is with regret that mums sudden catastrophic stroke may have been caused by the frustration and anguish of coping with dads decline. My Alzheimer's society home support worker summed things up for me once when she arrived to find me in floods of tears from tiredness of not having slept for nights on end...'your dad looks well ...you on the other hand....' She told me it is not uncommon as in mums case for a carer to die before the pwd because essentially the pwd is well looked after within their illness but it takes its toll over time on the carer. Certainly struck a chord with me so if or when get unmanageable for you get some help or have a re think on homes and why some of us are left with little option for our much loved pwd and our own well being.

 

[Georgina63]

For all those who have parents, spouses or any other member of the family living in care, please stop feeling guilty, feel the sadness but not the guilt.

Guilt is for those who have not cared.

That's a great sentiment, thanks jaymor. It's been a bit harrowing reading through the posts. So many sad stories out there, but we're all just doing the best we can. Gx