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1st post.Torn over travel plans. - Carers UK Forum

1st post.Torn over travel plans.

Tell us a bit about yourself here.
I have an 87yr old Mum who is currently in a residential care home. Her history is important so please bear with me!
She lived independently in her own home until January '18. During the past five years with increasing poor health and a number of emergency admissions to hospital (because she was no longer capable of looking after herself) we tried getting her some care at home. She absolutely hated it. In total she had over sixteen different carers and sacked them all (“couldn’t clean properly, can’t cook properly, didn’t always arrive at exactly the time she was meant to” etc etc). She employed four different cleaners and sacked them all (“not using enough elbow grease, using too much cleaning products, hoovers too quickly” etc etc!!). She tried four different homes and walked out of all of them (“too many old people, they’re all like zombies” etc etc). She visited four others, respectively said she wanted to go to them, shortly afterwards changed her mind and decided they couldn’t provide her with what she needed!
To say that the past few years have been frustrating and stressful doesn’t even come close to how we all feel. I run my own business and work from home (20mins from Mum) but travel around the UK to clients, my older brother moved to France just under a year ago after marrying a French lady and my younger brother has a high pressured, stressful job in London, stays there during the week and comes home (also 20 mins from Mum) at weekends. We are all in our mid 50’s. We are a very close- knit and loving family and until my older brother moved to France we always shared the care and visiting of Mum pretty equally between us – that is no longer the case. My younger brother and I are not resentful as our older brother has been through some truly dreadful years, had serious mental health issues and we are thrilled for him that he has found happiness once again – it just happens to be in France. He still comes back to the UK every 8-12 weeks or so for medical appointments and to visit Mum and the rest of us.
In February Mum became so ill as a result of her denial of her own inability to look after herself and refusal to let anyone else help either, she ended up in hospital and subsequently was entered into nursing care in a home as an emergency. We all agreed we could no longer carry on like this and made it clear to Mum that she simply had to stay in the care home this time – no walking out. She is now in her third home since then!! She is totally paranoid and accuses staff and residents of stealing wherever she has gone – and then we always find her stuff as she just forgets where she puts things. She even accused the staff of tying her to her bed in the middle of the night to stop her wandering around!! She has visitors almost every day and sometimes twice a day – some paid companions as well as friends and family. She has become depressed, says time drags and she is bored. In the next sentence she says time flies! As a rule, she intensely dislikes the residential home’s activities – I think it just reminds her of what point in her life she has reached. Whenever the doctor sees her she asks him to give her a pill “to end it all.” She has threatened to kill herself, which the home took seriously, but we all knew she would simply never do that.
Her short- term memory is poor and getting worse now but every time she does one of those dementia tests (x 3 now) she seems to muster up every brain cell she possesses and passes with flying colours!! But I am convinced she has the early stages of dementia – her behaviour can be just appalling – but catch her on a good day and she is not too bad.
What makes all of this even harder to accept and deal with is that we are extremely fortunate that money is not a problem. She could have the best care in the world – literally – but no money can get her what she wants – it simply does not exist. We were quite prepared to pay for 24/7 live in care but she only wants one person ("can’t be Indian, black or polish ☹") to look after her and we have said this is simply not possible. There would have to be a rota of at least three people – so she’s not interested and to be honest she would end up getting rid of them anyway.
I am emotionally drained (less physically now she’s in a home) and actually dread going to see her – currently once or twice a week – we have never had the most harmonious of relationships. It is utterly soul destroying to hear her negativity, her constant finding fault with anything and everything she possibly can and her seeming refusal to do anything that might make her life more enjoyable such as watching TV (which she did all day when she was in her own home), joining in with the activities, doing crossword puzzles, jigsaws, chatting to other residents etc etc. She always makes excuses for not doing them and blames everyone but herself for the situation she is in.
She has no respect for doctors and self- diagnoses from a medical book from 1902!! She refuses almost all medication and all investigations that might actually help identify how to make her more comfortable.
So……..my actual dilemma and the thing that made me want to post is this. My husband has a degenerative eye disorder and only has so much time left with good eyesight. We have decided that we want toundertake some serious travelling before he is no longer able to see properly and has to undergo at least one probably two eye operations. You can all probably imagine what is going through our minds. Although Mum does have her fair share of ailments, she has a strong heart and a family history of longevity. I am so torn. Both of my brothers have been diagnosed with prostate cancer, and both my hsuband's sisters have serious medical issues, and this has just added fuel to our fire that we should do this while we are still healthy enough to enjoy it and not wait. You just never know what’s round the corner (our Dad died at 52yrs). Mum is safe, she is well cared for and has more visitors than any other person I have ever seen in any of the care homes I have been into – by a country mile!! I have spoken to her about our plans and she says she wouldn’t dream of stopping us from going and that she understands why we want to go. But often what she says now is not what she says later – it may well eventually be twisted to “well you just abandoned me”. She already once accused us all of abandoning her, when she asked to move into the house next door to my brother and decided she didn’t like it. 3 weeks later she demanded to go back to her old house - so we moved her back!! I don’t know what my UK based brother will think – I am dreading telling him our plans – he is the one who is paying for all her care and obviously he will feel that all the burden lies with him – and he has a pressurised job.
If all you wonderful people who post here can give me any guidance or advice I would be most grateful. So sorry about the long post.
This one's a no brainer.

GO ON HOLIDAY!!!!!

Look, you've said it yourself - your mum does NOTHING to be happy, she is making herself unhappy.

She has done SUCH a number on the lot of you - honestly, re-read your post and see what a totally misery-guts she is!

She's old - she's had her life. She is refusing blankly to enjoy what is left to her, and that is HER PROBLEM NOT YOURS.

You have all done MORE MORE MORE than your fair share.

She does not deserve a single pang of conscience or pity from you

She is coming across as tyrannical, bossy, ungrateful, unappreciative, hypercritical and, quite frankly, a pain in the proverbial!

You are SO RIGHT to say we don't know what is around the corner, so ALL THREE OF YOU now must focus on YOURSELVES. Take everything you can from life, while it is available to you.

Your mum is beyond help because she is deterimed to be miserable and blame everyone else for simply 'getting old' .Well, she's old. She's had decades more life than her poor husband, and she isn't in the slightest grateful or appreciative. She does NOT sound like a nice person, or someone that anyone SHOULD make any sacrifice for at all.

Look, agin, she is going to be miserable WHATEVER YOU DO. That's the important thing for you all to remember. So if she's going to be miserable whether you are on holiday, or not, whether you visit, or not, let her

YOU ARE NOT RESONSIBLE FOR MAKING HER HAPPY!

Go on holiday, your remaining brother should NOT do any more than he is currently doing - personally, I would do a lot less. Leave her alone to be miserable on her own. She's miserable when you are there, miserable when you are not.

It's also clear that yes, she IS getting dementia, and she can fool the stupi9d tests as much as she likes (they nearly always test for the wrong things, sigh)(who cares if she can count backwards from ten, or know who the prime minister is - the point is she is 'helpless' in a care home, that is the only test that counts)! (the fact she makes false accusations, has no short term memory, etc etc, is again, de facto proof - I bet all the staff there know perfectly well she has dementia!)

So, like I say, let her wallow in her own misery, that's what she wants. It's her life, her responsibility to be happy or miserable.

You go on holiday ,and let that be a marker for you that when you come back, you bak off totally from fussing over her, don't even go and visit. Her dementia will worsen and unless something else takes her she'll end up like my poor MIL staring blankly at nothing......at least my MIL was a lovely person before she became so severely affected.

Like I say, repread your post, see your mum as she comes across to others, and then head for Heathrow!!!
Ps - why is your brother paying her care home fees? He has no legal obligation to at all.

Why not move her to a cheaper home where she can either pay herself, or if she has no assets, the council has to pay.

I don't see why your brother should fork out for her when she is so unappreciative!
Hello Helen
Please please persue your dreams. My husband is in a nursing home because of strokes and vascular dementia. I miss him dreadfully and visit regularly. We had lots of holidays before his illness and now I do not regret any, except for the last 3 where dementia was setting in unbeknown to me. Your mother is very well cared for, by the sounds of it, will still have plenty of visitors to oversee her care. Your husband is your priority as he probably has a difficult time ahead, and in all honesty won't be easy for you. Treasure the travelling with him. Don't live to regret, not going. I understand it's hard, I struggled to go on a day trip with a friend, but did, and very much enjoyed it! Hubby was looked after, my daughter's are regular visitors. Your life can't be put on hold, and let's face it, you can get back if absolutely necessary. I also would advise, whilst you are away, to make it clear you do not want to hear if she has been difficult, and such like. Just to know all is as well as it can be will be enough. You have done your very best for her, still are doing so. Nothing will change by you not going, and I suspect you will resent and regret it. So, plan, go, and enjoy. We change the word guilt to sad on the forum.
Sad the way things are, and nothing to feel guilty about.
Bear in mind, too, that she might actually be 'easier on the staff' when you are NOT around.....and easier on them than she is on you!

What kind of mum was she like before she needed care? I think that counts for such a lot. If she was always warm and loving and appreciative and encouraging, then yes, you cut her slack now. But if she was demanding and narcissitc and complaining and critical to you all, then no, you don't cut her slack now.

Yes, it's frustrating to grow old and infirm and have to rely on others. But the alternative is what your dad got. So which would your mum prefer?

PS - if her life HAS become an ordeal to her, then she is, I would argue, morally entitled to 'turn her face to the wall'. We should not 'make' someone 'stay alive' if they do not wish to. It IS her life, for good or ill.

PSS - wise words from Pet. I too, as a widow, have NEVER regretted the lovely holidays I took with my husband and son. Precious, precious memories that serve me in good stead now.
Wow! so many replies in such a short space of time! I have just burst into tears at the support I already feel from you all - thank you thank you thank you!

The really sad thing is that the reason she has so many visitors is that she used to be such a kind, caring and sweet person -always thinking of everyone else. These people are just some of those she has helped and shown great kindness to over the years - it's their way of letting her know they won't forget her and what she did for them.

To answer the question about why is my brother paying for the fees; well all he cares about is getting her what she needs as quickly as possible and I think we have all found that state funded care takes time to organise. She quite rightly says that she has earned her right to state funded care and wants my brother to claim back every penny he can. He - and we - are so bloody worn out we just have not got round to it yet!

Interestingly, Mum was the youngest of ten children born in Liverpool - they were painfully poor and five of her siblings died before the age of 5yrs. Add to that her Catholic guilt ridden upbringing and she is incapable of accepting or embracing any form of good life and luxury that we have the ability to pay for. She wears clothes that are over 40yrs old and sends back the M&S cashmere jumpers we buy her!!

My gut was telling me we should go, but it's funny how we somehow need "permission" from our peers and society to do something that I am quite sure some others would think was the abandonment of my Mum in the last few years/months/weeks of her life. I have two good friends who have parents of 104yrs and 102yrs and I do not exaggerate when I say I feel sick at the though that my Mum might be around for another 15yrs.

Once again thank you all so so much.
It's so SAD that someone who should be enjoying life has turned into such a misery.

I was widowed young, my husband died at 58. It's so important to go on holiday, have fun, laughter, make happy memories, while you can.

Mum certainly sounds like she is going down the slippery path of dementia.
Many relatives can spot it long before doctors can, because if you know someone really well you just know something isn't quite right.

My lovely sister in law died recently in her early seventies. I knew about five years ago something was very wrong, then I saw her fussing over meal prep (she used to be a brilliant cook) and she used a fluttery hand moment. Just that one little movement was all it took, because I remember her own mum, who also had dementia, making exactly the same movement. But I was the only one around to remember. It took three or four visits to the doctor with her daughter to get the GP to take their concerns seriously.

I'm afraid your lovely mum has gone. Nothing you or anyone else can do can make her happy, she may be incapable of being happy at all. You are not responsible for her actions, don't let her spoil your own life. You have absolutely bent over backwards to help.

I would strongly recommend counselling, it was hugely helpful helping me realise that I couldn't do any more for my mum. Her demands were impossible to meet (Empty all the cupboards in her big kitchen and take out the units themselves so that the new flooring could be laid under where the units were. All to be done in FOUR DAYS before a long lost cousin came to visit!!) I left in floods of tears that day, when I said to mum I couldn't do it, I was told I HAD TO, as that was what she wanted.
Twenty years later I threw away that roll of flooring before her house was sold.
A lot of your mum's behaviours will be down to the dementia Helen. She's not intentionally being miserable or nasty, she's behaving like this because the dementia has damaged and altered her brain so that she can no longer reason or see life 'normally' as most of us do.

Have you looked on the Alzheimer's Society's forum - 'Talking Point'? This forum is dementia specific and there are loads of sympathetic people on there dealing with all aspects of this cruel disease.
Another one saying "just go". OH and I went to Australia and New Zealand when Mum was 88 and very demanding. I did have to accept (and plan, with my brothers, for) the possibility that someone very elderly might go downhill rapidly while I was away. However, 12 months after we travelled OH was diagnosed with an aggressive tumour. He also had one or more strokes. If I had refused to travel because of Mum it would have been too late. Plainly, you already know you have a short window of opportunity - take advantage of it!
Thank you all once again. I cannot express how helpful it has been to read all of your hugely supportive posts. I quite literally feel a weight has lifted from me.

I have already visited just about every relevant online forum that exists on the internet, including the Alzheimer's one. They are all very good but this one I thought was particularly good.

We plan to go away months at a time so will be coming back home every so often, so it's not like we wouldn't see Mum at all. The only really big trip from which we probably would not come back is Australia and New Zealand, which would probably be a year. That is one trip we may take further down the line.

We are big users of Skype in our family, so I am hoping that we can have some calls with Mum this way when we are away - assuming she allows my brother to arrange it! She has always refused to have the internet at her house, despite the absolute joy she would have at watching the old hollywood movies she so adores - so so hard to understand such self punishment.