Worried about Mum

JANH - I have POA for mum, she has emegency pendant (lifeline) and key safe outside. She's living on mostly cold snacks - has declined any help with meals - deliveries of frozen meals or anything like that - won't even let me cook for her in her kitchen, but accepts sandwiches from M&S which are pre- packaged (uncontaminated in her eyes). I'm looking for sanwiches that can be safely frozen....

Yes Thebeeb, we can only see how things go and do our best at the time. Think I see some changes afoot now - after visiting my mum every 4 weeks, staying for a few days, for the past 12 years or so , I now see I need to visit more often. At the same time talk to her community nurse and see what she advises. I so wish I lived nearer ....

Mother-in-law is 97 and is at home with carers 4 times a day and a lady going in every day to check everything is ok. We visit every other week (2 hour journey each way) and keep up to date with the lady going in every day. She is absolutely wonderful and we would never have kept mum at home without her. Mum desperately wants to be in her own home. We just keep going solving problems as they come and have found that as each milestone comes, in her heart she knows she has to accept it and she does. We face each challenge when it appears as you just can’t plan for everything. Good luck Pollyanna2. We can only do what we think and feel is best at the time. I just know in our case mum treasures every day she is in her own home with wonderful people(ie the carers etc) helping her.

We looked after my elderly parents, they were 88 and 90 when they died. We lived over 60 miles away and travelled every day for around a year to ensure that we could meet their needs. We made food, froze it and transported it to them so that they (eventually carers) could defrost and then reheat in the microwave.
We sorted power of attorney, medical and money
Installed a key safe
Installed a telephone system, where they could call for help (pendant) in case of falls etc (lifeline)
They managed initially on their own.
Mother refused point black to go into a care home, even for respite/day care. Dad tried one care home for a day, didn't like it and never went to another.
We managed until eventually until the social worker said you are doing too much and got carers in although we still travelled daily, luckily we were both retired.
We did what we needed to do and spent some quality time with them before they died.

Oh - sorry - I posted that twice!! Didn't think it went on the first time?

I entirely agree with you Foxyferret and Tillybelle. All I want to do is support my mum in making her own decisions about her life for as long as she wants to and is able. I feel it's up to me though to make sure she knows what help and choices are actually available to her - so she can make 'informed decisions'. So I worry about whether I've researched everything enough... Thinking of 'allowing' people to make their own choices - reminds me of my late father, with advanced PD and in a nursing home due to tracheotomy complications - I used to take him home on visits and he would take himself off to the garage and do stuff with his power tools. That was scary!! Thanks for all your comments on here, you have given me some interesting and useful pointers and food for thought.

Thanks Tillybelle, she tells me I am a wonderful daughter but I think I do what most would do. She looked after me for years, now the tables are reversed I do what I can.

What about some respite care ? sounds like she would not want to go, but if you said it was a holiday for two weeks and she would come back after to her home, she may agree. Would also give you time to spend with your own family and have a holiday or at least some respite from worrying for yourself ,..it is not selfish at all and it sounds as if you are doing all you can. Since my husband died and I sold our bigger house, ready to move back to the UK I am renting a holiday chalet but I KNOW if/when/ I can no longer cope or wish to try to cope, on my own I would prefer to be with other people and not living a lonely life n a house I could no longer manage or a garden …..which is why I have bought a retirement flat with extra care when or if required …...I have no family that live anywhere within500 miles of where I will be and would NOT expect them to care for me if I did ! My husband's daughter never phoned him, came to see him, or even when he was in his last weeks of life and I gave her the number of his bedside phone she was 'too busy' to call him ...I am therefore very annoyed that under French law (where we live) she will inherit part of the sale proceeds which he did not want...…………...so please GO and research homes (you can do it online they should have a CQC report) or Age UK can advise ..it will not be the first time they have been asked for advice...………..good luck

Is there an Abbeyfield near you? They are not for profit so way cheaper than normal residential homes. The one near us is wonderful. I wish my mother was in an Abbeyfield house. She lives with us and talking about her is our main topic of conversation-her carers, her shopping needs, her meals, her doctors appointments...it never ends. DH and I argue more than we ever used to and are constantly tired. We feel like servants.

Foxyferret. Thank you so much! I think you are a wonderful daughter! You wouldn't fancy taking me on would you?!! Your mum is very lucky! Bless you! Lots of love, Elle x ??

I entirely agree with you, Pollyanna2, very well said, that you doing your best to "ensure that she knows what help is available" so she can make informed decisions. That's a really important point and she is very lucky to have you doing the research for her. She might even agree to looking at some places, who knows? I doubt it, but should she ever be incapacitated, say have a broken leg, and she has seen a nice place with her own room that she might be able to relax in, if such a need were to occur (Please God Not!) then she may be mentally prepared for such an adjustment. I had taken my mum to a beautiful place not far from her home before her Dementia became very bad, and she loved it, because the view was of the same hills as from her own house. I wanted her to have a "feeling" of acceptance if such a thing were possible, because in her case there was no choice once she was very badly affected. What a time you had with your dad! I can imagine it because of my mum. She was very fit and strong too and my back was already damaged so I couldn't hold on to her very well! If she decided to go off somewhere it was a nightmare! Like trying to keep a wilful pony from shying away!
How I hope I do not do this to my children! Oh dear, as we keep saying... old age!!!
But Pollyanna2, the more you write, the more I feel you will manage very well with your mum. Bless you, you are such a kind and loving daughter. Do try not to anticipate disasters or fear the future. With love, Elle x ???

Farawaynanny. So sorry to hear your Dear Mum has passed away. What good news to hear how she enjoyed being in the Care Home and how happy her last months were where she chose to stay! I hope all goes well on Monday and that the wonderful age your DM reached will comfort you as you give thanks for her life. With Love Elle x ???

I entirely agree with you Foxyferret and Tillybelle - it's my intention to support my mum in living the way she wants to as long as she is able and willing to make her own decisions. It seems up to me however to ensure that she knows what help is available - whether or not she chooses to accept it, so that she can make informed decisions as and when the need arises. 'Allowing' a person to make their own decisions reminds me of my late father - had PD and was being cared for in a nursing home due largely to tracheotomy complications. I used to take him home on visits - and off he would go into his garage and attempt stuff with his power tools - now that was scary!! Thanks for all your posts on here - have given me food for thought and opened my eyes somewhat.

Tillybelle. Thank you for that and your brilliant posts. I agree with you. Yes, I worry about her all the time but she is quite capable of making her own decisions. Whatever I think, I do not say. I respect the fact that she makes her own choices and she has always said she would never go into a home, she said she would walk into the sea rather than that. I look after her as best I can from a distance, I phone every day, I get everything she needs online, I arrange home food shopping delivery which she likes. When I buy anything she’s asked me to get, I always tell her it’s half the price that it actually is. I wish she lived a little nearer but again it was her choice to live on the coast and she has enjoyed it for the last 33 years. I visit as often as I possibly can and always stay at least a week to do jobs, tidy cupboards, take her to appointments etc. No worries with personal hygiene, she’s in the shower every day, and her house is spotless, even though she has many health problems.

Foxyferret. I think I am like your mum.

I hope my daughters will all be like you as I get older!

I recognise how terrifying it is every time you drive away from a visit to your DM, thinking "Will she be OK? Will she fall?" etc. But the kindest thing you can do is to respect her and know her. I can see you do. That is how you show your love! By letting her have the life she wants - her life and not putting pressure on her to go somewhere she would be "safe" and "looked after" because, if she is like me (and your description of her is very like me!) she would rather take the risk of falling over in her own home than being parked in a safe place where she would end her days just not being herself but feeling utterly miserable.

It is very loving to give in to your elderly parent and respect their wishes to live in their own home. I can bet you that they don't care a bit about whether they take a fall, or any of the things you poor daughters worry about! So try to give them their last part of their life how they want it to be! If they are not suffering from dementia, as my DM was, and can manage to eat and drink and have a wash, then be so grateful that they are living out their years the way they want to!

Farawaynanny . Condolences on the loss of your mum.

Pollyanna2
What a moving letter!
I think, having reached 92, your DM is doing well. I understand you having fears about her falling or getting ill but this could have happened at any time. It could happen to any of us now. I think she deserves the respect of being listened to and not made to feel she is being persuaded to leave her home or her way of living. It is her right to live how she wants. From what you say, her environment is safe, she is not hoarding piles of junk to fall over for example. It sounds as if she may just need someone to come in and make sure she eats at least at lunch time if she is forgetful. You have a Community Nurse to advise you.

When we ,- and I mean all of us here - (not Pollyanna2 on her own by any means) - talk about Residential Care as if there is no alternative or as if it is an inevitable end stage to our parent's life, in whose interests, exactly, are we sending them to Residential Care for? It's for them. You say. Because they are not safe at home. OK, in severe dementia they are not safe. What about Pollyanna2's mum? Is she "not safe"? if so how "not safe" is she? Being at risk is a continuum. So is being unhappy. What scenario are you trying to avoid that is unsafe if she stays at home? Is that actually worse than the degree of emotional distress you are going to inflict on her when you cast her out of her home and put her in an Institution?

When making a decision to remove a person from their home, please make sure you are doing it for their needs and not your needs or anxieties. If it is to stop you worrying, then forget it. You have no right to interfere. If your parent would rather fall and have a broken hip than go into an old people's residential home, that is their choice and they have the right to make that choice! It is the choice I shall make. I shall stay on my own and if that means I die earlier through accident that is fine.

My father, 14 years older than my mother, made a regular journey with his elderly friend through very dark country lanes. My mother decided as they were over 80 it was "time they should stop this nonsense." I asked why, she said they were too old and what if they broke down or had an accident? Bothe had their medical check for driving so were deemed fit to drive. I knew that not going would be another curtailment to dad's restricting life, at the hands of my mother. It was then that I realised that their age was simply an excuse to stop my dad enjoying something. It would be exactly the same if I were to make that journey. The road would be as dark, as winding and as icy. I told mum, they knew what they were doing, why make their old-age miserable? If they didn't come back at the expected time she would surely send a neighbour out to look or phone the Police? Why do we change our approach so acutely towards people when they are old? Dementia I can understand. But if a person is eating and is keeping reasonably clean and seems happy... why do we interfere?

Quality of life is all that matters. Being as contented as possible. Being as near as possible to being ourself. Not being forced into dire distress and irredeemable misery.

You are a good daughter, Pollyanna2, you know and love your mum. You couldn't be clearer when you said,

"I know, though, that mum would never survive in residential care".

That does answer those who say that people who said they did not want to live in Residential Care ended up enjoying it. Maybe some do. But who are we to think we shall know that our parent "will end up enjoying it"? There are too many elderly residents in care who definitely do NOT enjoy it! I really do know because I used to visit so many of them in so many different homes. Then there are the others who, having been forced there under enormous protest, die the day they arrive or soon after. How many of us know of a case of this happening? I certainly do.

The vast majority of residents in elderly care are putting on a brave face. Those who are doing really well are either quite fit or are wealthy and enjoy the luxuries of the more expensive Residential Homes.

To those who keep saying that you need to start planning residential care now, I say - in whose interests are you planning this? People talk about her going suddenly into hospital as though it is the worst scenario and failure too. It would be quite normal if she became unwell, frail and needed to go into hospital at her age! Most people go in to hospital some time before they die! There is nothing wrong if she did have to go in to hospital - I hope she won't - but should this happen, she will be looked after and not allowed home without many checks and measures put in place to ensure her care and safety.

The most important thing above anything else, is her state of mind. If your mum is happiest in her home then there she must. be. OCD always exists with underlying anxiety. It is something people do to alleviate anxiety. If she had it all her life then it is part of her. She is used to it. She does not want to be in an environment she cannot control. Most of all she would be very distressed in Residential Home environment surrounded by old people who would be around her, touching the things around her, sharing the same space, eating together etc.

It would, in fact drive me to insanity. If I were to be unloaded into a Residential Home with no hope of returning to my own home, then I would kill myself.

The only way I would survive it might be if I had advanced dementia.

Although it is a horrible worry to you, poor Pollyanna2, please do not put your mum in a home because at some point she might fall or become ill, because that would be for yourself. The Community Nurse may be able to come up with some good ideas for making sure your DM eats and is basically ok. Your mum will probably have to accept a little help in the house, but I am sure a way can be found to manage that so it impinges very little on your DM and bothers her as little as possible.

Being in her home really seems important to your DM or you would not have said so forcefully how residential care would affect her. Keep her there. Let's be realistic. She may live into her 100s, but not many people do, so why make her last years desperately unhappy by moving her?

If she has to go into hospital, she will understand. People do. Stop "dreading" the future if you possibly can. The forgetfulness sounds as if it is not galloping. She won't become utterly confused and unable to manage overnight, unless she has a stroke or hits her head and anyone can do that! . I doubt that she will reach that stage at all, take each day/month at a time and make sure she enjoys them!

If your dear mum has mental capacity, do as she tells you. She will love you and thank you for it.

Forgot to say she has a pendant alarm and a key safe.

My mum is 93 and fiercely independent. She has a gardener and that’s it. Has sacked cleaners before as its not done properly. Refuses point blank to have carers as she had bad ones tend my dad who was 94 when he died 5 years ago. She says the only way she will leave her home is in a box. She is a very private person and community living fills her with horror. She is 104 miles away from me but I get there as often as possible. She was ill recently with back spasm and I stayed for a month. I fear for this year as I can see she has got worse health wise, she is only 5 stone and so tiny, but very mentally with it. You cannot force someone to do something you think is best for them, so I do sympathise with your situation.

It may be worth looking into an extra care facility. My father has Parkinson’s and is on medication seven times a day. He became very confused and couldn’t remember if he’d taken them and I used to find them under the furniture and down the settee. I managed to get a social worker who was brilliant and at first he had dosette boxes then a machine that dispensed them but he was still dropping them or falling asleep and leaving them. Eventually he realised he wasn’t coping and he was reassessed and moved into the extra care facility within a month. It has a very spacious one bedroom flat with its own living room, kitchen and shower room. The facility has a restaurant and he has two meals a day there. Our local council have a brochure with information on all the care homes and extra care in our area so it may be worth you contacting yours or looking on the website.

It’s also very important to get both the health and welfare and financial power of attorneys in place ASAP. I’ve found that everyone asks for sight of them now, even just for simple things like cancelling a telephone line or changing a hospital appointment.

From my own experience you need to have a plan. Otherwise you will be overtaken by events and have to make decisions under stress. So check out care homes, carers, cleaners etc. A good cleaner can be your eyes and ears. Consider a care call in case of falls. Explain to your mum that accepting help now will enable her to stay in her own home.

I can't believe you are only going once every 4 weeks. Who is looking out for her in between if she doesn't like anyone else in her home?

I trust she is in a bungalow and not climbing stairs while she is on her own.

Everyone I have known with relatives that age now are of the ilk they do not want to go into residential care or have people coming in their home. It is understandable.

Despite that support in the home is a necessity at that age in some form. It is also very upsetting for them to be moved out of there comfort place into somewhere where they have no memories. This can make them feel more confused and go down hill quickly.

I hope you find a comforting solution to this for you both.

My 90 yr old Mum was discharged from hospital clearly unable to cope. I talked her into having respite care in a local care home with the aim of getting her back on her feet. After 4 days she decided to stay and had the most wonderful care for the remaining four months of her life. Her funeral is next Monday.

We have my MIL living with us - she’s also 92. It’s hard work - we are trying to encourage her to do more things for herself by herself but it’s difficult. Even though I couldn’t put her in a home at the back of my mind I wish we had as you don’t get time to yourself - which I really miss. I also would suggest you’d Mum has more daily contact with people - just to pop in to check on her - she may like it and you would be relieved knowing someone else is there. I don’t know what you think about a camera in her place - we had one for my Dad when he was alive - just in the lounge in his flat. If he didn’t draw the curtains in the morning I knew he needed help. It was attached to our phones via blue tooth - we could see him in the lounge and part of kitchen and also hear him - which was a god send when he fell in the kitchen as the camera just caught the view of his slippers so we alerted a neighbour which gave us time to get to him- I think they are a good idea - but your Mum may not like one. Good luck - oh to get old!! Xx

I don’t know if finances are a problem, but do make sure your mum applies for attendance allowance. You can google all the necessary information. In my experience she may need your help to fill in the forms- folks often underestimate their needs on the application form and it’s important to describe their needs on a “bad” day, not what they might be able to do on a better day.

I'd definately try and get a carer in once a day. At least that way someone is actually visiting. You dont say if she gets out at all. Age uk used to do a visiting service. Not sure if they still do. My mum is in a care home and although not perfect even mum says she feels safe there. You need to keep her out of hospital if you can as like Missfoodlove we had to move very quickly when they decided to discharge mum. Do a lasting power of attorney while your mum is still capable. As once the word 'capacity' looms you have to do everything through the court of protection. I'd start thinking of a plan so at least if anything did happen you have that to fall back on. Good Luck.