To wish my mym would properly consider care home for ailing Grandma

[hippohead]

My Granny is 94. She lives alone and until quite recently has been very independent. She has dementia (properly diagnosed) which is becoming worse and she is becoming more and more withdrawn. She is still herself- warm, optimistic, uncomplaining, kind and fiercely independent but sort of fading mentally. She has no awareness of time, forgets things from one hour to the next and is loosing the capacity to do more and more simple tasks e.g. make a cup of tea.

She sits all day in her kitchen, or lies on her bed. She no longer likes to have the TV or radio on. We take her out regularly or have her over to Mums or ours to eat. She enjoys this in small doses.

She needs a lot of help, but does not like being encouraged to do anything, e.g. left to her own devices she would not wash, take medication or eat but hates being 'encouraged' to do these things. She constantly insists she "will do it later" but its clear that she won't, so we have to gently insist but its a real battle. I think she feels we are taking her independence away, which we are sadly- but she really needs this help.

We (Mum, I and a few weekly visits from carers) visit her at least three times a day to help her get washed, dressed and eat. She hardly eats anything and has lost huge amounts of weight. She has seen a dietician who recommended giving her whatever she wants, whenever she wants it, which we do (carrot soup for breakfast yesterday). She also has some special calorie laden drinks which she will sometimes have.

She had a fall in the night. Luckily she is fine. She cannot remember what happened. She wears a redcare necklace which, once pressed calls an switchboard which calls us and send an ambulance. She didn't think to press the button so had been there for some time.

Anyhow, to cut to the point I feel we should consider moving her to a care home. My mum will not consider it. She becomes furious whenever I suggest it. Mum feels its a selfish option and that Granny should remain at home whatever. I want Granny to be safe and well looked after, and I am also concerned that the strain of caring for her is driving my Mum close to the edge (Mum's partner agrees that she is constantly very very stressed and emotional).

I suggested we discuss it again this morning but Mum lost it with me. She also said that if in the future I decided to move her (Mum)out of her own home to a 'prison' of a care home she would never speak to me again.

I feel that part of this Mum is projecting her own feelings about herself being moved from her own home in the future. A horrible thought for a woman who loves her home and is in good health with full mental capacity. But Granny is not that woman- I feel its time to give this some thought.

We could still visit her several times a day, take her out etc..

Sorry its so long- AIBU?

Incidentally, I forgot to say my grandma lived in homes for over 20 years in the end, gave her a whole new lease of life. She particularly loved gossiping with all the other residents and staff.

YANBU. I would drop into Age Concern and ask for advice, there is a lot of help that can be given in their own home. I have got similar with my own mother, she is mentally fine but with physical problems. She is with me for the moment, but I am not doing it full time from now on. She has had a wonderful life doing exactly as she wanted-long haul trips etc, her life is closing in now but I am not prepared for mine to close in with it. I want what she has had for the last 20 yrs.I went into Age Concern and warned them that I might cry all over them! They were very nice and there are options-it isn't a case of sacrifice your life or a care home. Find out what is on offer.

I feel for you, these issues cause such stresses for families. My Grandad died after dementia about 3 years ago now, and now my mother has it (early onset :()

I feel very different about my own mother to how I felt about my Grandad, and I did love him very much. He lived with mum and my siblings and I helped to an extent, but it was Mum and Dad that did the bulk of the work. It was hard, but I was relieved when he needed to go into hospital (he was in for a while and didn't come out again). In hindsight, my main concern was for my parents, although it didn't feel like that at the time. It now gives my mother a lot of comfort that she did everything she possibly could for him.

Now it is my mum, I don't want her to go into a home when it gets too much, and it is not rational, I just don't want it, because it would make her sad and I don't think they will take care of her like we could. It will no doubt cause us all stress and anguish.

I think you need to respect your mother's wishes and support her in those, even if it doesn't make sense, and perhaps pay for carers to a greater extent (you would need to pay for a care home anyway and they should give the same kind of care). Then you know that you don't have to visit every day between you.

Also, it's probably not that important if she doesn't wash/clean teeth etc every day even if that seems gross to us (obviously within reason). When Grandad was in hospital he didn't eat unless we bullied him into it, which in practice meant we had a rota to go in every dinner time to feed him and the extent to which we had to cajole and the time we spent wouldn't have been reasonable to expect the hospital staff to do for every patient. In one of the hospitals he was in we had to do a large proportion of personal care too.

I am going to go against the grain of the thread and suggest that if your GM has progressive dementia it is likely that before very long living alone will not be an option for her. If she has already fallen and been unable to summon assistance then she is arguably already not safe living alone. The choices then will be either residential care or 24 hour at home care either by a professional carer or your family. Your mum may just not be ready to accept the realities of what the dementia is likely to become yet, which is probably why she's so distressed by your suggestions. Rather than discussing residential care it might be worth having a more general chat with her about how the disease is likely to progress and what the options are for keeping you GM safe at the various stages. My GMIL has been suffering from dementia for a few years and has changed from a lovely kind cake baking old lady into someone who is agressive and violent anf left to her own devices will wander off aimlessly in the middle of the night. We tried very hard to keep her out of a home but after a couple of near misses putting electric kettles on gas rings it became clear that the risk to her (and her neighbours) was too great if she stayed at home and she is now in a dementia care home. She started off in one of the 5* style ones but they were unable to cope with her . Dementia is brutal and painful from both sides and you, your DM and your GM all have my sympathy

Thank you all so much for your responses and for giving me your own perspectives. It has really helped me today to discuss this on here.

Huge sympathies to those of you who are experiencing something similar.

I think its fair to say there has been a wide range of responses on here (all of which have been really supportive for which I am so grateful). I am not sure I am nearer to knowing what to do for the best, but I have a wider perspective, some good ideas (contact age concern, speak with SS, look into adult au-pair).

Just to answer a few questions:
Twiceasnice, I would love Granny to play a bigger part in this decision but she seems oblivious (mercifully I guess) to how confused she is and insists its just "old age", she is fine and doesn't need any help.

Moomaa, your take on the situation is very interesting and this plus other responses has made me realise I need to respect Mums view more, even though to me it doesn't feel right. I

Pisces- thank you for being so frank, I really do see where you are coming from.

I am living it at the moment,hippohead. I love my mum to bits and I want to look after her, but it is taking over my life. I now have huge respect for those who are full time carers. I felt much better when I had spoken to someone at Age Concern.I think that if my mother had dementia it would be much worse-at least she can have a proper say in solutions- hopefully to suit us all. Good luck.

hippo I really feel for you all. I currently look after my father who lives alone - but should really be in sheltered accomnmodation.

My DS and I make light of the care burden by trying to outdo each other in predicting how many phonecalls/visits etc will be required each day. (Some days upward of three an hour).

This situation has given me insight into the impact on the rest of the family when they are dealing with a struggling elderly relative who wants to maintain their independence. My DS is an only child and I am a lone parent - so DS would have to take on all of my care should I require it.

So I tell him regularly that 'when I get like granda put me in a home'. I have made sure he knows not to feel guilty about it and not to take any argueing from me whhen I no longer understand my decline. Put me in a home...please...then take me out for walks in my wheelchair and be my son not my carer.

Of course DS is only 11 and I am in my thirties.......so hopefully won't be for a very long time!!

I have done the same bentneckwine1-it has made me have a very serious conversation with all 3 of my DSs (I am older than 30's) and I have told them that they are not caring for me when I am old-either I will stay at home with a care package, go into sheltered accommodation or be unable to cope and go into a nursing home. (If I change my mind when I get older they are to ignore me). I am deadly serious-the one thing that I want to give my DCs,beyond all else, is freedom.
My mother has had a fall and I am happy to help at the moment but I can't do the level of care that I am giving indefinitely, without having a nervous breakdown! As it is I can't work at the moment which is why I am on MN at 9.30am on a Monday morning!
I think that even if your mother is determined to manage,hippo, she should see what help is available.

My mil had this problem with her own Mum.

As the family all lived at least 1.5 hours away from Great Granny, a team of carers was put in place and they went in 4 times a day I think. Meals were delivered from Wiltshire Farm foods and just had to be microwaved. The carers sorted breakfast and tea. Great Gran had full Alzheimers but was adamant that she wanted to stay in her own home.

She had a red button alarm, and forgot to use it, so was found on the floor quite often. Mil and her siblings decided to move GG downstairs completely (had enough downstairs rooms for this) so managing stairs no longer an issue. It was a calculated risk leaving her in the house, but the alternative was putting her in a home, so some risk is inherent.

Two points:

1: If your gran pays CTAX, then there is a Severely Mentally Impaired exemption which can be triggered; I think that having attendance allowance may be a pre requisite here, and you need to see if you are entitled to that.

2: The carers that mil had were paid for by social services; it is possible to arrange this and organise your own team of carers and pay them direct yourself, with SS providing the funding.

picesmoon - It is interesting that your own experience has made you think in a similar way to myself...seeing the situation from the inside gives an insight that even the best trained professionals can't provide.

With dad I am always getting comments from 'outsiders' along the lines of how good it is that dad can stay in his own house if that is what HE wants. I wish they could see that it is me who is facilitating dad's independence...and my DS who puts up with the restrictions the caring has placed on our lives.

Both my parents have needed care...my mum was only 55 when she died of breast cancer three years ago when my son was only 8. In her last few months I needed to bath/dress her and assist to the toilet. My mum hated every moment of that and I could tell it distressed her - but she still had full mental faculties and knew what was going on.

Whereas with dad he has Huntington's Disease which causes mental and physical problems...I am now power of attorney and he has limited capacity to understand. He is only 59. The idea of having to provide 'intimate' care to him is really worrying - it wasn't pleasant with mum but would be worse I think with dad.

Last year he was in hospital and I had to change him into pyjamas when he was admitted - it gave me a shake and a 'flashforward' to the future where my DS might have to care fo me (Huntington's Disease is genetic).

So I tell my DS 'when I get like granda put me in a home'. Simple as that. I have been thinking about making one of those 'living wills' things now to make it clear to everybody involved that I want to be placed in an approriate institution - fully aware that I might tell them I have changed my mind nearer the time...they have to ignore me and go with what was decided when I had full capacity to consent.

My mother was in hospital for a while and all the elderly said 'care home'the way that you would say 'the workhouse'!!
I can see that in the old days you would avoid the workhouse at all costs but the relatives would have no life either so having an ailing mother wouldn't matter if you hadn't even got the busfare to town!
I don't think that is is the same-I have the plane fare to Australia and want to go (my mother has been!)and my mother has the money to pay for care. I am hoping that when her mobility improves she can have independence but help in sheltered housing-fingers crossed.
I know it is selfish but I want my life back-I want to go back to work (and turn the heating down-we have to keep it too hot!)my mother didn't have to be a carer and I will make sure that my DCs don't!
I am happy to be very supportive, spend lots of time with her-but not ALL the time.
Old age is very difficult-my FIL said it wasn't for sissies and he was right!

Just lived through much of this in the last year with my father who has dementia.
Have you tried Admiral Nurses for support ?
www.dementiauk.org/what-we-do/admiral-nurses/
They're not in all parts of the country but they are truly wonderful - can't praise them enough.
Also the Alzheimers Society provides a lot of support for carers and people with dementia - doesn't have to be Alzheimers. They have helped me so much at different times.

I have been my dad's main carer for 4 years since my mum died. He is immensely intelligent, articulate man and completely fooled many health professionals for some time. He finally went into (very good high end) nursing home to give me a break after I slipped 2 discs in my back and was unable to lookafter him. DH did his best to pick up the slack but DF not the most accomodating of creatures and would only accept help from me. Only supposed to be there a week but staff approached us, very concerned about him going back to live on his own as he had deteriorated so much since he had last stayed with them when recuperating from an operation.

He too had emergency call button but didn't remember to use it. Burnt himself, flooded bathroom and kitchen, went out without coat when pavements were covered in ice etc etc. It was the inability to identify danger and to askfor help which was the most worrying.

Didn't want to give up his independence, believing himself quite capable of living on his on with 'type of support family should give anyway'.
We did consider live in help but he is not tolerant of others and would have fallen out with them quickly.
After a 'best interests' meeting with social workers and Admiral Nurse it was agreed he should stay in the nursing home. As his consultant said in supporting letter, the fact he did not realise he needed help was one of the strongest reaons for him being in a care home.

I do feel for you and for your mother. It's a terribly emotional step to take but I would urge pragmatism. Yes, I had responsibility for my dad (still do, still visit multiple times each week, talk with staff all the time etc) but I also had responsibilty to DH, DC, my employees (run a small business) and to myself. The slipped disc was a real wake up call.
btw he is still in the home and is much more settled, and safe.

It sounds like your mum is effectively sticking her fingers in her ears and going 'lalalalala' - perhaps she just doesn't want to face up to the fact that her lovely mum is no longer able to look after herself, never mind look after her the way she used to.

It may not be that she doesn't think your Grandma needs to go in a home so much as she knows that she does, but can't bear to accept it.

This is an emotive issue. My mum went into a care home around 3 years ago - she has severe dementia and no longer knows who I am. I am the last person she "lost".

For a number of years I ensured she stayed in her own home. We had a home care company in three times a day which she bitterly opposed and whilst she had the capacity, used to ring and cancel. I had to reinstate them continually. She became very abusive towards me which was very hard to take because I had already taken on a further caring role when my two grandchildren were placed with me through the courts and also desperately needed me.

Sadly she was always a very difficult person, but the dementia did not particularly exaggerate this aspect of her personality. We were not close but despite having siblings, I was the only one who regularly visited. It is so sad how people "disappear" when someone has dementia.

The care home she is in is just adequate, but it is so true that people do go rapidly downhill once they go into care homes. Because they are confused and more is done for them, they lose capacity more quickly.

I am regularly rung by the home if my mum falls, to tell me to wait with her at hospital. I am often in an awful dilemma because I dont have anyone to have the children and I can no longer control my mum as she will lash out at me and the children are afraid and I can't get her back in my car. I am told she has been admitted to hospital, but when I actually ring the hospital before I set off, I am told she has not. I believe the situation is because of understaffing at the home. Although she is supposed to be looked after I am still effectively regularly called out and made to feel dreadful if I cannot immediately respond.

These are all things you and your mum need to consider. Sorry I have been very blunt and perhaps cold, but this is the reality of hthe situation your mum is facing.

How would your mum feel if her mother fell, was seriously hurt or worse? I have had this and the ambulance crew blamed me for not putting her in a home.

You sound a really caring person but your mum cannot let it drag her down to this extent.

I have an update this morning. Mum is still pretty livid with me but she has spoken with social services about having some more regular help from their carers. We will need to fund this but they are going to visit before 8am and at 9.30pm to get Granny up and help her go to bed. They have said though that they are concerned about her lack of cooperation- she insists she will get up / dressed / eat / take medication when she is ready and there's only so much they can do t persuade her. They have agreed to concentrate on the latter two for now as they are the most important.

We will then visit once a day each (Mum and I). They have also suggsted a few other things to make her environment safer.

Thank you to everyone who has posted.

Piscesmoon- I don't think your attitude is selfish. You clearly want to make sure your mother is well cared for without it severely impacting on your life. I think that is a balanced view and it is the way I see it too. I am convinced that if Granny was less confused she would hate to see what this is doing to my Mum, she has always been dead set on not being a burden and a huge advocae of enjoying life to the max while you can. I keep reminding Mum of this but its not helping.

Bentneckwithwine, I am sorry to hear about the difficult situation that you find yourself in with your father and that you lost your mother so recently. I can understand why caring for him may be even more difficult than for your mother. Like you I am an only, as is my Mum and my DS (3yo). I am determined not to do this to him. I like your words "be my son not my carer" and I will use them in the future.

WhatdoIknow, like you I feel the lack of awareness of needing help one of the most worrying parts of Granny's illness. I have never heard of Admiral Nurses so I will look into this.

Witchy you have quite possibly hit the nail on the head from my point of view. However, its such an emotive decision for Mum, she is convinced that Granny will somehow die very quickly and be unhappy in a home. Its very hard to know what to do for the best, and I don't think there is a simple answer.

I am glad your mum has spoken to social services hippo, at least there will be some extra support in place.

Oh yes, the cancelling and reinstatement of home care. Usually at weekends whenever there was a change in personnel. Exascerbated in our case by the standin carer asking DF the next time she visited 'so you decided against cancelling your care then?' - resulting in concerned call from my brother that there was someone at Dad's house doing a review of his care needs and what should he say...
Some health and social care professionals will say 'if you father/mother does not want this in home care we have to respect their wishes'. Hence 'Best Interest' meetings to be followed up by 'Deprivation of liberty' decision in extreme cases. The whole point is that often if they have dementia (not always) they are incapable of making the decision anyway.
Be strong and get advice from Age Concern, Admiral Nurses, Altzheimers Society etc. I was amazed at how much fantastic support there was out there once I started looking (also what big gaps there were - nothing is perfect).
A care home can be a great reduction in stress - for the person with dementia as well as their family. Dad fell last week and hurt his head. Within 5 minutes he was in bed, checked over and supplied with a cup of tea, TV turned to a channel he liked, doctor had been called, regular obs for blood pressure, fluid intake etc. If he had been at home he would have had to wait for my daily visit, followed by ambulance, hospital A&E, indignity etc. I've done all that with him before and it was an ordeal for him.

I have a question about contacting Age Concern: Can you phone just to ask advice? Do you think they would talk to me even though I am not Granny's primary carer?

I was in the exact same situation as you a few years ago, battling my Dad and Mum over the care of my Gran. My Brother and I did more than our fair share of looking after my Gran and did not begrudge her a second of our time, however it was painfully clear to us that due to her worsening dementia we could not do enough, even with social services doing everything they could to keep her in her own home (it was a shame that the social services were completely poo in her area - doing my best to be polite :)).

I understood where my Dad was coming from, wanting to keep his Mum in the home she had been living in for all of his lifetime, he just seemed blinkered from the bigger picture. My DB and I never wanted to just 'shove her into a care home', but we were scared for her wellbeing, she was housebound and the less she saw of people the more withdrawn she became.

It's a long story, but when my folks were away I had to demand to take over her care (she was found collapsed and dehydrated). She was put into emergency 'restbite' and when my parents returned from their holiday they refused to speak to me. Only once they had seen her and how much she had improved whilst she was in restbite care would they work with me into trying to get her into a care home.

She lived in a really great home, where the constant interaction with other people really seemed to help her come back a bit to her old self, unfortunately she died about 18 months later (due to a cack NHS hospital, but that's another thread)

I think I will always feel a bit of guilt for being the person who started the ball rolling for putting her in a home, and maybe that's what your Mum is worried about? You feel like you are the one that is taking away their freedom, and it is a big responsibility.

I would really advise trying restbite, it gives you and your Mum a break to be just think clearly for a week or two without the constant worry, and everyone can see how your Gran reacts, and its not a full commitment to being in a home, its almost like a 2 week holiday. Age concern were great and happy to speak to me and offer help wherever they could.

Sorry, this goes on a bit! But I just want you to know I've been there and understand

I would just phone and ask. Tell them the situation you are in and how concerned you are about your mother.
Also the Altzheimers Scoeity runs a lot of drop in cafes and other meetings that you would be eligible to attend. Have a look on website alzheimers.org.uk/ to find one local to you.
Local authorties also have carers' groupsand carers' courses. It's in the local authorities' interest to keep its carers healthy as that keeps its costs in control. So if you are concerned about your mum they will usually want to help. Better to help you find a good home for your grandmother now than pay for long term hospital care following a fall or other accident plus mental or physical health care for your mother should the strain all become too much...
Good luck.

I just popped into Age Concern office in town and they got someone to phone. You don't have to be primary carer and you don't have to take the advice. It is just helpful to have someone to discuss it with. They then sent me a lot of information through the post.
I think that I am in a common position, I was an older Mum when mine were born and my mother wasn't young when I was born and you get sandwiched between.
Someone earlier said about writing a living will and I think I will do that when my DCs are old enough to be counted as carers-I do not want them to do it and if I get Alzheimers I want them to know that they must put me in a nursing home-and not feel guilty.

Yes living will sounds a great idea.