When will I know it’s time for a care home?

[Champers]

Hello there.
Just starting the long road with my mother. We are presently awaiting the result of a brain scan but tests conducted at the memory clinic seem to point to vascular dementia.

Presently, 87 year old mother lives alone (2 hours away from me) and has rapidly deteriorated in the last year. She was always a formidable - even contrary and difficult - character throughout her life. Her behaviour has always been irrational and unpredictable and I always suspected she was an undiagnosed narcissistic personality disorder but during the last few months, she has become a needy and very emotional woman. Whenever I ring she is always in tears or ‘feeling ill’, ‘worried’ or ‘lonely.’ But, despite me arranging for her to be picked up and taken to her local community centre to meet her friends, she either turns the driver away, cancels or makes an excuse about the weather etc. She talks constantly about ‘when am I going home?’ although she has lived in the same house for 60 years and when I gently remind her, she laughs it of and says of course she knew that.

She has ‘lost’ four debit cards and several hundred pounds of cash in the last few months, only because she keeps taken the money out of her handbag and putting it somewhere safe in the house; which we usually find after turning the place upside down. Despite this, she regularly calls me and insists she needs to go to the bank to get more cash and is adamant she hasn’t got any, despite not going anywhere to spend it.
I have a financial and health and welfare LPA, so all her bills are paid and I have arranged to have her shopping delivered as when she did go on her own, she was buying anything on special offer, whether she needed or not which meant there was loads of out of date stuff in her fridge etc. She often rings and says she still needs to go shopping too, even when I know she’s just had a delivery.

I have a registered carer coming in once a week to help her put her shopping away and to offer companionship for a couple of hours which I will probably increase to 3X a week now. Mother has also lost a huge amount of weight despite appearing to eat so I’m not sure if something else is going on, although her blood tests came back normal.

Conversely, she is keeping herself and her house very clean and neat and takes great care in her appearance and is very fussy about others perceptions of her. I had a gentle chat about whether she felt she might be happier in sheltered accomodation but she got very angry and threatened suicide if she was moved. Tbh, at the moment, the familiarity of her home probably helps her, but when will I know when I have to step in?

Sorry it’s such a rambling thread but mother was a very complex person - even before this additional complication.

 

[Helly68]

One of the main triggers for my mother was when she started to set of for a GP appointment, wearing whatever she happened to have on, at midnight. She wasn't safe at home and it was too much to expect my father to keep caring for her.

We started her as a daytime visitor, a few days a week (paid for as we are self funders) at a care home, where she now lives. The transition was relatively smooth -I would say don't wait too long. Mummy's physical health improved in residential care, as she was eating properly and liked having a set routine.

Residential care isn't for everyone, it worked for us. Once Mummy's actions put herself and possibly others in danger, it was time to consider a different solution. I wish you all the best.

 

[karaokePete]

Hello @Champers, welcome to the forum, which I hope you will find to be friendly, informative and supportive.

I recognise many of your mother’s traits in my wife, although they do seem a bit more severe with your mother.

You will find that the Society Factsheets will answer many of your questions and you can find the publication list with this link. Click the PDF lines on the documents for as easy read

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

 

[Rosettastone57]

Hello there.
Just starting the long road with my mother. We are presently awaiting the result of a brain scan but tests conducted at the memory clinic seem to point to vascular dementia.

Presently, 87 year old mother lives alone (2 hours away from me) and has rapidly deteriorated in the last year. She was always a formidable - even contrary and difficult - character throughout her life. Her behaviour has always been irrational and unpredictable and I always suspected she was an undiagnosed narcissistic personality disorder but during the last few months, she has become a needy and very emotional woman. Whenever I ring she is always in tears or ‘feeling ill’, ‘worried’ or ‘lonely.’ But, despite me arranging for her to be picked up and taken to her local community centre to meet her friends, she either turns the driver away, cancels or makes an excuse about the weather etc. She talks constantly about ‘when am I going home?’ although she has lived in the same house for 60 years and when I gently remind her, she laughs it of and says of course she knew that.

She has ‘lost’ four debit cards and several hundred pounds of cash in the last few months, only because she keeps taken the money out of her handbag and putting it somewhere safe in the house; which we usually find after turning the place upside down. Despite this, she regularly calls me and insists she needs to go to the bank to get more cash and is adamant she hasn’t got any, despite not going anywhere to spend it.
I have a financial and health and welfare LPA, so all her bills are paid and I have arranged to have her shopping delivered as when she did go on her own, she was buying anything on special offer, whether she needed or not which meant there was loads of out of date stuff in her fridge etc. She often rings and says she still needs to go shopping too, even when I know she’s just had a delivery.

I have a registered carer coming in once a week to help her put her shopping away and to offer companionship for a couple of hours which I will probably increase to 3X a week now. Mother has also lost a huge amount of weight despite appearing to eat so I’m not sure if something else is going on, although her blood tests came back normal.

Conversely, she is keeping herself and her house very clean and neat and takes great care in her appearance and is very fussy about others perceptions of her. I had a gentle chat about whether she felt she might be happier in sheltered accomodation but she got very angry and threatened suicide if she was moved. Tbh, at the moment, the familiarity of her home probably helps her, but when will I know when I have to step in?

Sorry it’s such a rambling thread but mother was a very complex person - even before this additional complication.

My MIL had a personality disorder along with other mental health issues before the dementia diagnosis. It took family members a long time to twig anything else was going on with her behaviour . She had mixed dementia and managed on her own with carer visits for 3 years . When she had numerous falls and couldn't recognize her own home and got confused where the rooms were, this was the tipping point for more supervision which means alternative accommodation.

 

[Fullticket]

I can only encourage that you get her into day care, preferably at the place you are thinking about her being cared for full time. That way she will get used to the people and the location and the transition, when it happens, will be that much smoother. Don't leave it too long as any changes you make as the disease progresses will become harder to manage (for her and for you).

 

[Champers]

Thank you all for taking the time to reply - really appreciated.

Your comments all ring so many bells to me, especially RosettaStone. The existing personality disorder has very much muddied the water. Because mother has always been an unusual character, it too has taken some of my family members a while to realise that this is not normal, for her. I’m an only child so I asked her brother - who she sees very infrequently - to have a chat with her. He decided he would come and stay several days with her and said that, apart from 15 unpopened jars of marmalade in her cupboard, she didn’t seem any different, except older! I had to point out that she had completely forgotten her own sister was terminally ill and was adamant that she had never been told this and that she kept asking where my dog was (he was put down last August)

I’m not sure if it’s possible but it seems as if she ‘holds it together’ as much as she can for those not so close to her but saves it all up for me. She does seem almost obsessive about me, but not a normal parental love, it’s a clingy neediness. I get all the hysteria and the around and round questions. Sometimes, I get my husband to answer the phone as, because he’s not so emotionally involved, he can remain calm and not get drawn into her dramas which is cowardly, I know.

She rang this morning in a frenzied state saying her handbag was missing and that the stress meant she was struggling to breathe and felt like she was dying. I’m positive the handbag is just mislaid in her disorganisation and so I suggested that maybe I needed to call an ambulance or a doctor if she really was that poorly? She snapped out of it immediately and said she wasn’t that bad and she didn’t need help after all. I’m trying to avoid getting sucked into these scenarios as I get worked up and feel powerless but when I speak to her subsequently, it’s like they never happened!

There was one small bit of humour in the whole thing however. Mother had some hearing aids fitted in October but has stubbornly refused to use them as she says she ‘can hear a pin drop’ and they are a waste of money. When I pointed out that she WAS struggling to hear and where were they, she told me that her regular gardener, who is a lovely man, ‘had come into the house and stolen them’!

Sorry! I just needed to sound off.

Once again, thank you. A community like this is invaluable in its support and the realisation that no one needs to try and battle on alone makes a huge difference.

 

[Rosettastone57]

Thank you all for taking the time to reply - really appreciated.

Your comments all ring so many bells to me, especially RosettaStone. The existing personality disorder has very much muddied the water. Because mother has always been an unusual character, it too has taken some of my family members a while to realise that this is not normal, for her. I’m an only child so I asked her brother - who she sees very infrequently - to have a chat with her. He decided he would come and stay several days with her and said that, apart from 15 unpopened jars of marmalade in her cupboard, she didn’t seem any different, except older! I had to point out that she had completely forgotten her own sister was terminally ill and was adamant that she had never been told this and that she kept asking where my dog was (he was put down last August)

I’m not sure if it’s possible but it seems as if she ‘holds it together’ as much as she can for those not so close to her but saves it all up for me. She does seem almost obsessive about me, but not a normal parental love, it’s a clingy neediness. I get all the hysteria and the around and round questions. Sometimes, I get my husband to answer the phone as, because he’s not so emotionally involved, he can remain calm and not get drawn into her dramas which is cowardly, I know.

She rang this morning in a frenzied state saying her handbag was missing and that the stress meant she was struggling to breathe and felt like she was dying. I’m positive the handbag is just mislaid in her disorganisation and so I suggested that maybe I needed to call an ambulance or a doctor if she really was that poorly? She snapped out of it immediately and said she wasn’t that bad and she didn’t need help after all. I’m trying to avoid getting sucked into these scenarios as I get worked up and feel powerless but when I speak to her subsequently, it’s like they never happened!

There was one small bit of humour in the whole thing however. Mother had some hearing aids fitted in October but has stubbornly refused to use them as she says she ‘can hear a pin drop’ and they are a waste of money. When I pointed out that she WAS struggling to hear and where were they, she told me that her regular gardener, who is a lovely man, ‘had come into the house and stolen them’!

Sorry! I just needed to sound off.

Once again, thank you. A community like this is invaluable in its support and the realisation that no one needs to try and battle on alone makes a huge difference.

When my mother-in-law was diagnosed in 2015 the psychiatrist stated then that she had a premorbid personality in which she displayed many of the characteristics that are associated with dementia . They were present well before the diagnosis probably most of her adult life. The kind of behaviours you are describing are all too familiar to me especially the attention seeking and using illness all her life to get that attention. In some ways having a dementia diagnosis was a relief because we could now get a proper name to something which she had been suffering with for many years.

 

[Louise7]

I’m not sure if it’s possible but it seems as if she ‘holds it together’ as much as she can for those not so close to her but saves it all up for me. She does seem almost obsessive about me, but not a normal parental love, it’s a clingy neediness.

These are both quite common dementia symptoms. The first is known as 'hostess mode' when the individual puts on a 'front of normality' for others such as doctors, friends, but finds it less easy to keep this up all the time for those who are caring for them. The clinginess can be a sign of anxiety /insecurity - my Mum used to follow me about all the time. Welcome to TP and don't apologise for sounding off. You'll find the forum full of useful advice and support from others who have been through the same things

 

[DeMartin]

I can relate to the hearing aids. Mum’s next door neighbour “ came in and stole them”.
Mum’s in a care home now, and the hearing aids are with mum, not that she “needs” them, she also can hear a pin drop, certainly hears me speaking to the carers.

 

[Amy in the US]

Champers, welcome to Talking Point. I am very sorry to hear about the situation with your mother and that you have needed to find your way here, but hope you will get good advice and support.

Definitely, when you have time, consider having a read of the information and factsheets available here on the Alzheimer's Society website. Dementia is a huge and steep learning curve for many of us and I know I struggled to understand the disease, after my mother's diagnosis.

I could have written so much of your post; your mother and her situation sound very similar to mine. I am also a only child of a mother with a lifelong history of many and varied physical ailments, a complicated medical history, depression, neediness, and the list goes on. She was also not a great mother to me in many ways and we were never close and always had a "difficult" relationship. Sadly, there are more of us in this situation than you would expect.

I lived about a two hour drive away from my mother and in the space of a couple of years, went from seeing her a few times a year, to at least twice a week, in an attempt to support her and figure out what was going on. What was going on, was undiagnosed dementia, with other medical problems, but mainly the dementia. She lost weight, she wasn't eating, she couldn't pay her bills, she lost thousands of dollars to scammers, she lost her ATM/debit card, she had car accidents (two that I know of), she was letting dubious people into the house, she almost had a house fire, she wasn't taking medications properly and was on a dreadful cocktail of prescription and non-prescription drugs. In short, I don't know how she avoided serious injury, illness, or death (her own or someone else's). I didn't sleep properly for a couple of years, worrying, and my own health has been affected.

In the end, I had to wait for a crisis. She went wandering early one winter morning, inadequately dressed, and wound up (thanks to a Good Samaritan) in hospital. She was malnourished, hallucinating, and injured from a probable fall. She was then sectioned (the US version), spent ten days in hospital, and then we moved her to a care home near where I live. This sounds horrid, I know, but it was the best thing that could have happened to her. She has thrived in her care home, at least until the disease took its inevitable toll. My only regret is not being able to move her into a care home sooner. It was only luck, or the grace of the gods, that prevented something worse from happening, and I would not have been able to live with myself had that occurred.

When I had a good look at her home (whilst she was in hospital and I had gone for clothing for her), what we found was appalling. I had only been permitted in the public areas of her home: kitchen, lounge, guest toilet. Those were all clean and tidy. The rest of the house looked like a hoarding show on television. There was spoilt food in the fridge and pantry and cupboards. She hadn't used her tub or shower in a long time (judging from the layers of dust and cobwebs in both). Soiled clothing and bedding were everywhere. There were moldy clothes in the washing machine and moldy dishes in the dishwasher and everything was filthy. It took us months, working weekends, to clear and clean the place. There were piles of paperwork everywhere and it was all a mess. She had not paid some bills and double paid others. She had destroyed most of the family photographs and papers but preserved trivial items.

I am sorry to go on about myself, as well as for the brutal honestly, but thought it might sound familiar, and would like to encourage you to get help and support in place before there is a crisis.

It is incredibly difficult to support someone long distance, I know. There are no easy answers and there is only so much you can do.

Usually the time for extra care and support, or residential care, is long before we start wondering about it as an option. The person with dementia, especially when at a distance, is usually worse off than we think they are. Hostess mode, as described above, can be incredibly strong, especially in earlier stage or when the brain damage is less severe or only in limited parts of the brain. I suspect that if you spent a week with your mother, 24/7, you would see that she is not as well as she appears.

It is possible your mother is now at the stage where she is not safe to be left alone without supervision, or not for long. The repeated phone calls and anxiety and wanting to "go home" are all common with dementia, as is cancelling plans, denying that help is needed (she may have anosognosia, which means she cannot understand there is anything wrong with her), making excuses to not go places, withdrawing socially, not eating, and so on.

Specifically regarding the weight loss: my mother did the same and dropped to an unhealthy weight and was malnourished to boot. It was terrible. The only thing that got her to eat was to have company at meals, directly across the table from her, and for that companion to eat (or pretend to eat) as well. She would refuse all offers of food (I'm not hungry, I just ate, I will eat later, I cooked a big meal, I am planning to cook tomorrow, the list goes on) until it was placed in front of her and she took the first bite. She would eat only as long as the person across from her, kept their fork moving! Dementia can interrupt the body's signals of hunger, thirst, and satiety to the brain and there can be other problems as well, to make eating a problem (visual spatial issues, vision issues, memory, taste changes, and more). We have been through other bouts of this problem a few other times in the four years she has been in the care home and outside of illness (especially an infection), I've never been able to figure out why this happens. So I would instruct the carers to give her three meals a day plus snacks, and not to ask her: just give her the food and sit and eat with her.

Leaving snacks or finger foods easily available may also help encourage grazing. If she has lost a significant amount of weight I would worry about calories, not nutrition, so make it appealing and full of calories (ice cream, chocolate, biscuits, cake, whatever). Sweets are often more appealing, even to someone who previously didn't have a taste for them.

More information about eating here: https://www.alzheimers.org.uk/get-support/daily-living/eating-drinking

Sorry to have gone on so long.

I hope you are able to find a solution, as I know how worrying this all is. Remember you are in good company here on Talking Point! Very best wishes to you.

 

[Champers]

Gosh Amy! So much of what you say sounds just like my mother, especially the eating. For years she has always been a bit prentious with food, “I don’t eat this, I don’t eat that.” when I know jolly well that last week she did. Interestingly, for a long time we had noticed that, because my husband is a fast eater, as soon as he put down his cutlery on his plate, so would she - even when she had plenty of food left! I always assumed it was because she had some inhibition about eating and not appearing to be a hearty eater. She has always believed that it is essential to be ladylike and delicate and to look like she had a small appetite.

Just like yourself and RosettaStone, my relationship with her has always been very tricky, she always resented the fact that I was a strong, independent woman who wouldn’t play her mind games and that I wouldn’t let her interfere with my life, marriage and children, that’s why, to get my attention, she would feign illness etc. She was always incredibly judgmental on those she considered ‘weak’ and had a morbid and Victorian view of mental illness - almost as though it was catching. She always maintained depression sufferers just needed to pull themselves together and the bitter irony is that when one of her friends was diagnosed in 2014 with ddementia, she dropped her like a hot potato and wouldn’t have anything to do with her.

Mother’s friends generally didn’t see this side to her but she managed to alienate a lot of the family with her destructive behaviour. I had a half sister from my father’s first marriage whom she told some terrible lies about to cause a family rift, so she wouldn’t have to see her again. My half sister once asked me why I even bothered about her and why I didn’t cut her out of my life because she was so toxic? It’s a strange thing - I don’t love mum and I’m not even sure I particularly like her (which is a wicked thing to say) but I guess I now pity her and wouldn’t wish this disease on anyone. Plus, I feel a sense of duty to do the right thing to another human being. She has shrunken from this confrontational personality to a weak and feeble old woman who is petrified of everything.

Please don’t apologise for going on, I appreciate everything you have said and your post is really informative.

Thank you for the links too. They are just what I need to read. X

 

[Rosettastone57]

Gosh Amy! So much of what you say sounds just like my mother, especially the eating. For years she has always been a bit prentious with food, “I don’t eat this, I don’t eat that.” when I know jolly well that last week she did. Interestingly, for a long time we had noticed that, because my husband is a fast eater, as soon as he put down his cutlery on his plate, so would she - even when she had plenty of food left! I always assumed it was because she had some inhibition about eating and not appearing to be a hearty eater. She has always believed that it is essential to be ladylike and delicate and to look like she had a small appetite.

Just like yourself and RosettaStone, my relationship with her has always been very tricky, she always resented the fact that I was a strong, independent woman who wouldn’t play her mind games and that I wouldn’t let her interfere with my life, marriage and children, that’s why, to get my attention, she would feign illness etc. She was always incredibly judgmental on those she considered ‘weak’ and had a morbid and Victorian view of mental illness - almost as though it was catching. She always maintained depression sufferers just needed to pull themselves together and the bitter irony is that when one of her friends was diagnosed in 2014 with ddementia, she dropped her like a hot potato and wouldn’t have anything to do with her.

Mother’s friends generally didn’t see this side to her but she managed to alienate a lot of the family with her destructive behaviour. I had a half sister from my father’s first marriage whom she told some terrible lies about to cause a family rift, so she wouldn’t have to see her again. My half sister once asked me why I even bothered about her and why I didn’t cut her out of my life because she was so toxic? It’s a strange thing - I don’t love mum and I’m not even sure I particularly like her (which is a wicked thing to say) but I guess I now pity her and wouldn’t wish this disease on anyone. Plus, I feel a sense of duty to do the right thing to another human being. She has shrunken from this confrontational personality to a weak and feeble old woman who is petrified of everything.

Please don’t apologise for going on, I appreciate everything you have said and your post is really informative.

Thank you for the links too. They are just what I need to read. X

I don't think you need to feel bad about saying how poor the relationship is with your mother. My husband and I did what we needed to do to keep my mother-in-law safe, to be blunt, out of a sense of duty and a belief it was the moral and humane thing to do. She went into a care home back in August and only lasted 6 weeks in there before passing away peacefully. Both my husband and his sister who moved abroad many years ago, felt resentment towards their mother . I felt that as well but to be frank it became more a feeling of pity. It's very difficult to deal with toxic parents as well as dementia. Of course that's not to belittle other's situations which are far worse than ours were