What Would You Choose?

Ed1964

Registered User
Jan 18, 2012
121
0
One of the many things that I have realised in retrospect is that I don't - and should never have - give a damn about my mum's neighbours - all of whom have moved now anyway. Unless your loved one is actually threatening people - or being really offensive - or appearing naked - then damn the neighbours, people opposite/round the corner/at the shop. Who cares? they're no-one to you, are they? So, who do you really care about? No-one, I’m told is ever ‘demented’, only ever dementing, so the original person is in there somewhere. So the only person to care about is your loved one. Not Soc Services or the council or even the police. They're nobody to you.

Yes, a lot of behaviours can be ‘annoying’ and time consuming, but hey, does that person really deserve to be put away for life for being annoying or needy? I know it’s an individual thing – how bad is it and how much do want to take, but I wish that I hadn’t listened to third parties telling me that I had done enough, going there every day, washing and cleaning, shopping etc. I was worn out, but the alternative has proved much worse for me. I’d give anything to be stopping on my way home from work to mop up today’s spills, clean mum and persuade her into pyjamas so that I could put today’s dirty clothes in the wash. Missing every weekend in my real life, going to hospital a dozen times a year etc – I’d do it gladly now if I had the chance.
Until there is a cure for this range of ailments, which we presently lump under ‘dementia’, we have to accept that it is a ‘rest of life’ problem for sufferers. Dementing people tend not to live that long once ill, so it is unlikely to be rest of life for carers.

I do wonder why so much dope is prescribed – particularly ‘depression’ meds. Certainly vascular dementia is a physical thing – not psychological, so what use is it to block serotonin? It does stop thinking and reduce cognitive abilities, but is that what we want for our loved ones? SSRi’s don’t just block ‘bad’ thoughts, paranoia or persecution, but all thoughts are dulled. All, including recall – specifically short term recall, so why is it that they are prescribed to treat a condition that includes problems with short term memory? As friend, whose mum is also a sufferer put it to me ‘I’d rather have her mad than a zombie’. Other dementia meds are known to cause loss of balance, incontinence, speech problems, hallucinations – and to induce paranoia – even psychosis. Really want to add those nightmares to someone already in distress?
How weird is your loved one? In comparison with their old self, maybe pretty weird – but lots of people behave strangely and no-one feels that everything has to be treated. If the behaviour isn’t dangerous then so what? Who would want to be so stoned that they couldn't be bad, even if they wanted to?

I do have a massive guilt about the things that have happened to my mum, in truth, she was as happy as she could be, in her own home, with the things that she had worked to buy, in her own company. As she put it to me recently ‘how long could you stay in here, (the CH), surrounded by sick people, unable to go outside when you want, to eat when you’re hungry or drink when you’re thirsty?’ “Not long” was my rather pathetic reply. ‘No one wants to be in here.’
I shouldn’t have cared that the SW said ‘when they’re this bad, they really should be on care’. Stuff that, there was a lot of ‘out of sight, out of mind’ in that statement – and also, ‘I’ve got too much on to spend any real time on individual cases’. So much that was promised never materialised – or was just pathetic (to include those 5 minute home visits, short because the home carers weren’t paid for travel time etc.). You don’t want to complain because that flashes up warning lights with the various agencies involved.

If I could go back, I wouldn’t tell anyone that mum was ill, I’d just do my best to deal with whatever came up as and when – and tell a lot of nosey-pokes to clear off. I would do more and moan less.
‘She’d be dead by now’ I’m told. Really? And? Would that be so much worse than being incarcerated for years with nothing, stoned out what’s left of your mind? I know what I would choose for myself.
That’s my point, really, what would you choose for yourself? To struggle on or be put away? Try to apply that to your loved one, if it’s still possible.
Ed
 

Witzend

Registered User
Aug 29, 2007
4,283
0
SW London
I think meds do have a part to play when the person is endlessly or frequently agitated, unhappy or very distressed by their own delusions or imaginings. If there had been something to help a poor lady at my mother's CH, who spent much of their Christmas party crying and terribly distressed because she thought her mother didn't know where she was and would be worrying, then I think it would have been cruel not to give it - it was heartbreaking to witness.
Or when the person's behaviour becomes too difficult/aggressive for carers to cope with.

As for neighbours. in my experience they can often be very kind and will put up with a lot before saying anything. In the case of my father in law, there had been a lot of knocking on doors at unsocial hours because e.g. he had locked himself out yet again, and quite unpleasant accusations of stealing things nobody in their right mind would want anyway. But it was quite a while before any of them said anything, and even then it was not actually complaining, just to let us know what was going on since we lived a 2 hour drive away.
My own mother found neighbours very kind when my grandmother started banging on their door at 2 am in her nightie, asking to be driven to Scotland (from Berkshire!) but at the same time it wouldnt have been fair to expect them to cope with this on a regular basis.

Personally I don't think it fair to expect neighbours to put up with this sort of thing for any great length of time. Or asking someone several times a day to come round because they have forgotten how to work the TV remote - one case I have heard of, but I think not uncommon.

I don't think any of us ever actually WANTS a relative to go into a care home, but there may often come a point where someone really does need 24/7 care and supervision - someone on hand ALL day, ALL night, 365 days a year - when family and/or carers calling in even several times a day just isn't enough any more.
 

stanleypj

Registered User
Dec 8, 2011
10,712
0
North West
I don't think any of us ever actually WANTS a relative to go into a care home, but there may often come a point where someone really does need 24/7 care and supervision - someone on hand ALL day, ALL night, 365 days a year - when family and/or carers calling in even several times a day just isn't enough any more.

I understand and agree with the point you're making Witzend. You're absolutely right that many people have no choice eventually. I'd only add that there are cases where the relative and the PWD do actually agree that it's the best move.
 

Terry Towelling

Registered User
Jul 4, 2016
55
0
Northamptonshire
My Choice? I have no idea.

War and Peace - Chapter Two.

I tried to keep my wife off meds for as long as possible. We did try Donepezil a few years ago but it caused much distress. We then used nothing for a few years more and all was reasonably good. Then, the violence started. I learned how to prevent it escalating too far by modifying my own behaviour but eventually I couldn't seem to avoid being a target.

You are right that many things don't really matter - dirty, smelly pants, seats, carpets etc but infections caused by being insanitary do. UTI's have played their part in my life and that makes life bad for both - especially when living 24/7 with your fellow sufferer.

So, some drugs do help to gain compliance and enable washing etc, not to mention getting the antibiotics in to get rid of the infections. We've both been struggling increasingly for the last 7 years (since diagnosis) or around 9 years since the first signs appeared and I would try anything to bring her back to me and to keep her with me. We spent 10 days apart when she was sectioned and that was a living hell for both of us. I would rather have the assaults than be apart again - but I have to be realistic.

I only drug (or should I say 'medicate'?) when I can see that things are going pear-shaped and I have found that Lorazepam actually brings the 'person' back to me. She becomes the loving woman I met 32 years ago and, apart from a bit of yawning she is not at all spaced out - thankfully. Risperidone is different and I don't use it if I can help it. I am retrying Memantine at a very low level to see if we can get improvements in the longer term.

I think I would choose to have someone who loved me to look after me in my own home and I wouldn't abuse them for doing it - but then it is easy to say that when you don't have dementia. You have no idea what things mean to a sufferer or why they fight back against someone obviously helping them. I hate this disease and what it has done to our lives.

Sorry for rambling or if I have missed the point. I could say so much more but, probably, no one would want to read it all.
 

Rodelinda

Registered User
Jun 15, 2015
172
0
Suffolk
My mother, who has vascular dementia, has lived with us for 5 years. She's nearly 90 and has deteriorated significantly in recent months. We're lucky in that we have the space (though we've had to make a lot of changes at home to accommodate her) and I had to give up work which as I was the main wage earner led to a big drop in our income. But at the time it was the best solution and I suppose I'm glad that we didn't know what was in store. My partner and I continually think about what is best for her and at present we still consider that it's living with us rather than moving elsewhere. She may not always know who I am, has increasing hallucinatory episodes and often doesn't understand what we're saying but she is surrounded by her own things, has me there to be her 'memory', has the food she likes when she likes, and broadly speaking is content (other than when she wants to go home - which is increasingly frequent). I can make sure her health needs are taken care of (she takes almost no drugs) ind that she has clean clothes. But it is taking a toll on us both individually and as a couple. There will come a time when we will feel it necessary for her to move somewhere where she has greater care - though I realise this is likely to mean she is given drugs to calm her. I'm trying not to think of this as 'putting her in a home' but as 'she needs to be living somewhere different now in this next phase of life'. After all, she lived with my father for over 60 years and wouldn't have thought she would ever have to move in with her daughter. They are really hard decisions to make for all of us and I think I'm with the school of thought that says stay at home if possible but only while it's safe and on balance is beneficial to the individual and those caring for her or him. When the balance shifts too far away from there is less choice. I'm always humbled by what others on TP are willing to do for their loved ones. Just some rambles from me. Sue
 

Georgina63

Registered User
Aug 11, 2014
973
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That's a hard one Ed. So much of what you have written resonates.
My folks both have AD and are still at home (I live nearby), although as of today they are in a local care home for a couple of weeks whilst I am away. It's been a rocky road, but to this point I believe that home has been the best place for them (although my sibling and I couldn't disagree more). My Mum is more advanced than Dad, and so it's further complicated determining what best suits them both. We have had both extremely positive and helpful behaviour as well as downright distressing comments from neighbours - I think fuelled by fear and ignorance. I've always done what I feel to be best for my folks, and sadly do foresee a time in the not too distant future where a move might be needed when living at home with care is no longer sustainable. And so, whilst I have this in mind as a possible next stage, I'm in the meantime trying to take each day as it comes and enjoy the positives. Gx
 

Marnie63

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Dec 26, 2015
1,637
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Hampshire
At the moment, based on my experience with my mother, aged 90, sudden onset Vascular Dementia 9 months ago, extremely confused, bladder incontinent ... I would chose to stay at home. But, I am only child with no other close relatives other than mum, so I need to plan very carefully for my own future! Not that I will necessarily come down with the same condition, but as long as I still have some sense of what's going on, I would prefer to be in my own home with people coming in to help me, or even someone living with me.

Some of your comments Ed moved me very much. Your comments about what your mum said about staying in the home, not going out when you want to, eat, drink, when you want to (probably not being able to pee when you want to either as you have to wait for someone to take you ... ) reminded me of the horrendous 10 days' respite stay mum had in a very, very bad 'care' home. I felt a lot worse during that time than I had felt in the hours leading up to the phone call to Social Services asking them to help me very urgently as I was close to the edge.

At the moment, mum is back home. I am 'forcing' more carer time on her so that I can have more breaks and am now taking her to day care once a week, which is not ideal as her English isn't brilliant, but I am 'forcing' that too. It's all to give me enough of a breather so that I can carry on looking after her at home (on my own, but with carers coming) for a bit longer. (If only I could explain my motives to her!) I have found much better homes, and mum is on the waiting list at two of them (just in case), but I know I will always worry about her if she is out of sight. I cannot describe to you how badly I felt when she wasn't being washed in the home, was being fed disgusting food, and was made to use a toilet where the door was jammed open for the convenience of the 'carers'. Yes, honest! I do not want that for my mother. She may have dementia, but she knew very well that was a very, very bad place.

My mum will stay with me at home for as long as I can manage this. I don't mind wiping her bottom, I don't mind dealing with wet pads and underwear. What I do want is to be able to give her a hug and a kiss, have her around me, give her nice food (which she still loves), make her laugh, put her to bed. Make her feel safe and loved. I know she may receive a 'service' in a better care home, but she won't be loved in that way, and I don't (at the moment) feel I can deny her that. I know I am saying goodbye to her every day now, who knows what this ugly disease will send our way next.

I know full well there may come a day when I can no longer do what I am doing, it may not be possible for many different reasons. But I also know that there is a limited time to this disease due to mum's age. I do feel 'trapped' and I cannot continue with my life in the way I intended, but I also know that there's no way I would be enjoying travel again, knowing mum is being handled by a stranger in a care home. I am happy to put my life on hold, for now, to keep mum at home.

The meds are another story - I prefer mum to be her real, new, confused self - and while I can manage her in this new form, I will not give her any of the awful meds that have been recommended.

Referring to Bunpoots' comment, right now I am happy to survive in mum's world rather than live in my own as I am confident I will still get that chance when all this is over - and I will be much happier in my own world then, knowing that I did what I did.
 

Missy

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Dec 18, 2006
70
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The last thing I ever ever want for my kids is to give up their futures to look after me when I have had most of my life and they have much of theirs to come. So if staying in my own home meant that, then I would choose a care home.

Also, with cuts in social services funding etc, it becomes ever more important that people save for their own care plans later in life which will be much more difficult if they have given up work themselves to care for an elderly relative.

I am fairly selfish when it comes to caring, my FIL would dearly love to live with us, but he needs someone on hand 24/7 and it can't be me. So he is in a (very nice) care home. In the end, for someone with multiple needs and requiring constant care to remain at home it requires a huge sacrifice on the part of another relative. That or pots of money to pay for live in care. Hats off to all you fantastic people who make that sacrifice.
 

Witzend

Registered User
Aug 29, 2007
4,283
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SW London
The last thing I ever ever want for my kids is to give up their futures to look after me when I have had most of my life and they have much of theirs to come. So if staying in my own home meant that, then I would choose a care home.

Ditto, 100%.

The last thing I would ever want is to be a worry and a burden to my kids. However much you may love someone, caring for anyone with dementia past the early stages is often a terrible and most exhausting strain.
My kids have strict instructions and I have also put it in a living will.
 

Chemmy

Registered User
Nov 7, 2011
7,589
0
Yorkshire
I have also instructed my children that I do not want them to be hands-on carers, but I would expect them to use my assets, without hesitation, to provide me with the most appropriate care.

Re. Medication. Would I want to left to be agitated/paranoid/fearful/aggressive? No thank you.
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
I have also instructed my children that I do not want them to be hands-on carers, but I would expect them to use my assets, without hesitation, to provide me with the most appropriate care.

Re. Medication. Would I want to left to be agitated/paranoid/fearful/aggressive? No thank you.


My solicitor holds a letter, my children hold copies of my wishes which mirror Chemmy's.

My husband spent 4 years of the 11 he lived with dementia in a nursing home and the care was wonderful. I have no fears of life in a care home and as long as our children put the same effort into finding the right home as they did with me when looking for nursing care for their Dad then they will have done a good job.

My husband had CHC with 1:1 care so his needs were great and medication helped so much to calm him, to take away his torment etc. He was never zombified or left to deal with any side effects.

Of course I would likely see my days out in my own home but not at the expense of my children and grandchildren. They will love and care for me in a care home as they did their Father and Grandfather.
 

Linbrusco

Registered User
Mar 4, 2013
1,694
0
Auckland...... New Zealand
In an ideal world, I wouldn't have to work even part time, the Government would pay me equally to look after Mum with AD & Dad with MCI, plus my husband with high health needs, I would get all the community & financial support available, and I would have siblings and extended family that helped more than they do. Plus also Dad would be more understanding of Mums Alzheimers, and use Compassionate Communication :)

My Mum 75 is at a moderate stage of AD, and is only on 5mg of Donezepil.
Yes she hears things, and sees things that aren't there, but they don't distress her, and she is anxious alot of the time, but is on no meds.
Still we are looking at full time care for Mum. It is beyond Dads capacity, and I can't simply care for 3 people ( least of all Mum who needs 24/7 supervision) and 2 teenagers.

Although EPOA's are in place, wills etc, my husband and I are about to complete an advanced directive.
If my husbnads brain tumour reoccurs and is then terminally ill, he has no hesitation going into Hospice, after seeing his own Dad with cancer spend his last days at home, and my children have been assured that if either of us were to get Dementia, that they should not feel any guilt or hesitation into placing us in care, if it becomes unmanageable.
Everyone is different....
 
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Pickles53

Registered User
Feb 25, 2014
2,474
0
Radcliffe on Trent
The last thing I ever ever want for my kids is to give up their futures to look after me when I have had most of my life and they have much of theirs to come. So if staying in my own home meant that, then I would choose a care home.

Also, with cuts in social services funding etc, it becomes ever more important that people save for their own care plans later in life which will be much more difficult if they have given up work themselves to care for an elderly relative.

I am fairly selfish when it comes to caring, my FIL would dearly love to live with us, but he needs someone on hand 24/7 and it can't be me. So he is in a (very nice) care home. In the end, for someone with multiple needs and requiring constant care to remain at home it requires a huge sacrifice on the part of another relative. That or pots of money to pay for live in care. Hats off to all you fantastic people who make that sacrifice.

Missy, I agree with everything you say except I would not describe your feelings as 'selfish'. To me, it would be selfish for me to expect my daughter to throw away her future and that of her children to look after me or my OH. So we will do our best to make sure that we have enough savings to buy good care if/when we need it.

Everyone must do what they think right, though, so I would never criticise anyone who makes a different decision.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Mum is living in a care home now. She wanted to come and live with me, but I was already a full-time carer for OH and could not do it. I tried a week-end, but that very quickly made it obvious that I could never make it work.

The period before she went in and she was living "independently" was the worst time ever. She wasnt cooking, cleaning, doing laundry or shopping, which I suppose is not life threatening, but she was also not washing, changing her clothes, nor eating or drinking as she could not even make herself a cup of tea anymore. She was also going outdoors in the street in her nighty and knocking on neighbours doors at 2.00am in a very distressed state because she didnt know where she was. There were other problems with her neighbours too - she kept getting into arguments with them over the bins and the woman across the road called the police as she said mum was harassing her! I really dont think it is fair on the neighbours to have to put up with too much of this, even if they understand.

Eventually mum had a TIA and ended up in hospital. When she was admitted she was dehydrated and severely malnourished. She is now in a carehome and has thrived. She put on some weight again, made friends with some of the other residents and is so much happier now that there is someone around all the time. She doesnt have to wait until someone comes into the house to make her a cup of tea and if she gets frightened or confused she is never by herself and there is someone to reassure her. She was highly anxious and paranoid when she went in - that reduced considerably after she was settled there and apart from some Aricept and medication for things like her atrial fibrillation and kidney failure she does not have anything else - she does not take anything to calm her down or make her sleep. This has been managed by the care she has received. She does not remember her old home and she has been happy, well fed, kept clean and warm and is surrounded by friends.

No-one wants to consider the possibility of a CH, but in mums case it has definitely been the best decision for her and I would do it again. In fact I would be happier to do it again as I wouldnt feel guilty about it.
 

Chemmy

Registered User
Nov 7, 2011
7,589
0
Yorkshire
My MIL's situation was very much like your mum's, Canary, expect she was the opposite with the neighbours - she turned into a recluse who used to hide if one of them came to the door.

I have again stressed to the children, that however much I might argue against it at the time, they are not to let me end up living 'independently' like Grandma B. So-called independence in reality often means squalor, malnutrition and loneliness. MIL has thrived in the CH and has a better social life now than she had for decades.
 

LYN T

Registered User
Aug 30, 2012
6,958
0
Brixham Devon
I have also completed a living will which states that the CH option will be for me if I get Dementia. The only promise I needed from my Dau was she had to choose a good CH-like I did for my Husband. One that lets you have a drink/eat/use the bathroom when you want (if able).My Dau is also aware-and always telling me- that 'her' inheritance only comes into being when I've passed.
 

Ihtl

Registered User
Jan 19, 2016
82
0
The last thing I ever ever want for my kids is to give up their futures to look after me when I have had most of my life and they have much of theirs to come. So if staying in my own home meant that, then I would choose a care home.

Also, with cuts in social services funding etc, it becomes ever more important that people save for their own care plans later in life which will be much more difficult if they have given up work themselves to care for an elderly relative.

I am fairly selfish when it comes to caring, my FIL would dearly love to live with us, but he needs someone on hand 24/7 and it can't be me. So he is in a (very nice) care home. In the end, for someone with multiple needs and requiring constant care to remain at home it requires a huge sacrifice on the part of another relative. That or pots of money to pay for live in care. Hats off to all you fantastic people who make that sacrifice.

This is very much how I feel about this. Having spent the last few years going through this with my dad and still being in my 20s, I'd be lying if I said (like others I'm sure) I don't mourn the life I could otherwise have.

Having only just turned 61 and being in good health otherwise, my dad could well live for decades yet.

The last 18 months - 2 years have been hell and the thought of going on for even one more year is soul destroying. I haven't been able to mourn my mum who passed 18 months ago, I've lost a good career and my social life is pretty much non existent.
I know this sounds selfish, but I very much would like my own life. Having spoken about this in light of his own mother's dementia, I know my dad wouldn't have wanted this.

I'm actively looking into good care homes and also pursuing CHC funding.

Has anyone faced negative opinions from friends and family about full time care?
Some friends seem to think no matter what my dad should stay at home :rolleyes: They hear the tales of violence, incontinence, anxiety etc and say "it's tough", "you're doing well" yet shriek at the thought of full time care. One friend even suggested that in another 10 years, everything would be ok - I don't know what she thinks will happen in 10 years' time that'll remedy this situation. With all due respect to other people's ages on this forum, I'll be close to 40 in ten years' time and if the situation stays the same, I'll have spent over a 3rd of my life caring for my dad by that point.
If CHC funding doesn't work out for him, at least he has assets to pay for his care; if I spend the next 10 years as a carer, I won't have a penny to retire on, let alone pay for my own care should I need it.

I don't want to be so asinine as to suggest that people who have never faced a situation like this shouldn't offer their points of view. But I find it difficult to put up with people who haven't even asked what day to day life is like, (or, shock horror, contemplate that full time care might be better for the PWD) yet remain so dogged in their belief that family should always do it.

Re Medication, it's been a huge help to my dad to help control his violence, anxiety and depression. Though it needs a review as his day centre have asked that he not return until he's seen the mental health team after yet another violent outburst.
 

Pickles53

Registered User
Feb 25, 2014
2,474
0
Radcliffe on Trent
I know this sounds selfish, but I very much would like my own life. Having spoken about this in light of his own mother's dementia, I know my dad wouldn't have wanted this.

I'm actively looking into good care homes and also pursuing CHC funding.

Has anyone faced negative opinions from friends and family about full time care?
Some friends seem to think no matter what my dad should stay at home :rolleyes: They hear the tales of violence, incontinence, anxiety etc and say "it's tough", "you're doing well" yet shriek at the thought of full time care. One friend even suggested that in another 10 years, everything would be ok - I don't know what she thinks will happen in 10 years' time that'll remedy this situation. With all due respect to other people's ages on this forum, I'll be close to 40 in ten years' time and if the situation stays the same, I'll have spent over a 3rd of my life caring for my dad by that point.
If CHC funding doesn't work out for him, at least he has assets to pay for his care; if I spend the next 10 years as a carer, I won't have a penny to retire on, let alone pay for my own care should I need it.

I don't want to be so asinine as to suggest that people who have never faced a situation like this shouldn't offer their points of view. But I find it difficult to put up with people who haven't even asked what day to day life is like, (or, shock horror, contemplate that full time care might be better for the PWD) yet remain so dogged in their belief that family should always do it.

.

I'll say it again. There is nothing selfish in what you say or feel. Your dad absolutely wouldn't have wanted this for you, and you are right too about the implications (financially and otherwise) for your own future. I've read too many distressing posts on here from former carers facing homelessness and worse as well as grief after the person they were looking after has died. It is really important that carers think about these issues before they decide what they're going to do.

And as for comments from anyone who hasn't been there....I'd be telling them a few home truths and then to mind their own business since they clearly have no idea what they're talking about.