How do I physically get my mother into respite care if she refuses to go

[EJB63]

Hello.

I hope somebody can offer me advice.

With the help of my wonderful husband, I am the sole carer of my 86 year old mother who has mixed dementia. Although she was only officially diagnosed in August 2021, she started showing signs of dementia approximately 8 years ago after a TIA. She had been referred to the Memory Sevice a couple of times previously, but refused to attend.

My father died 4 years ago after suffering cancer for 3 years. During that time I cared for my mother and my father as my mother could not get a grip of the situation. So, I have been caring for a long time and it has been, and still is, extremely tough.

To make matters worse my mother is convinced that there is absolutely nothing wrong with her and that I move, steal or swap things to confuse her and make it look as if there's "something wrong" with her and that all I want to do is to put her into a care home so that we "can go and live our lives ". In reality we have had no life for 7 years and she would not be able to live in her own home without us living close to her and giving her 24 hour support and care. We are at her beck and call 24/7.

This is our problem. Our son lives in Australia and we have not seen him for 3 years. During the pandemic when we were unable to travel we accepted the situation. But, now we can travel, we desperately want to visit our son and we need a break from caring and from my mother. The only way we can do this is if she goes into respite care. She will fight against this all the way.

Do we tell her we are going and that she's got to go into respite?

Do we tell "compassionate lies" about the reason she has to go into respite? What could those reasons be?

Do we not tell her until the last minute when everything is arranged?

The biggest problem of all is, what if we have have everything arranged, flights booked etc and on the day she is due to go into respite she phsically refuses to leave her house or enter the care home?

Help!!

Thanks.

 

[Sarasa]

Hi @EJB63 and a warm welcome to Dementia Talking Point.
I move my mum into care as 'respite' though I knew it would be a permanent move when she was at what sounds a similar stage to your mum. I was off on holiday and my brother was seriously ill in hospital so I knew if she was left at home without me there to sort out day to day problems a crisis was very likely to happen. I just took mum and left her there. It wasn't easy and to say she was cross was an understatement but the alternative would have been worse. Some people have had some success by saying it is a hotel, and certainly in mum's care home they took off their badges and cracked open the prosecco to persuade her that's what it was.

This is a very supportive site and I'm sure others will be along shortly with their ideas and suggestions.

 

[Rosettastone57]

We had a similar situation with my mother in law. She was self funding and we had carers in every day ,but not overnight. She lived on her own . My husband wanted to visit his sister in the USA and we knew that my mother in law would refuse to go into respite. She refused to leave her own home even for doctors appointments or to visit us. So we arranged overnight carers for the 3 weeks, which cost a fortune, told her the day before we were going.
I arranged for a neighbour to bring groceries and we had a milk delivery arranged. She already had a befriending service. We informed the GP and I wrote to social services about the situation. So we went and it all went smoothly. Of course she was abusive to us, but we ignored it. The following year, she had really gone down hill and we couldn't contemplate going away. Not long afterwards she ended up in full time care

 

[lollyc]

I would certainly go for the "don't tell her anything" approach. Even when it was something my mother actually wanted to do, telling her about it just caused so much grief. She would constantly question where? when? what? Had I forgotten the event? Got the day wrong? By the time whatever it was came round I was at the end of my tether!
One problem you may have is that it's not easy to book a respite place too far in advance, or at least that's what I found. You could find the ideal care home, but when it comes to it, there isn't a vacancy, and you have to look elsewhere. My Mum was a pretty easy resident, so didn't require specialist care and we had a reasonable choice, but it would be more difficult for PWD with more complex needs.

 

[Muttimuggle]

All I can say is that i really, really hope you can do it. I am in a similar situation with my mother but don't have such a pressing and important need as you do. Our son lives only 1 and a quarter hours away now. I am driven mad by the constant demands of my mother and I also manage alone because my sibling and I do not get on and he prefers to take a back seat whilst also interfering with his criticisms. If I had such a pressing and important reason as you do I think I would achieve it any which way I could. You deserve to see your son and he deserves to see you. My mother, also with mixed dementia doesn't really recognise there is anything much wrong with her except being a "bit forgetful". Many days I feel I just cannot do this anymore. I also suffer chronic pain with an inconclusive explanation for it. Sometimes the situation with my mother and my pain is too overwhelming. This would be my reason for putting her in respite care but it sounds more selfish than yours. I have been looking at residential care locally today to see what is available. Today she is not well again. No point in A&E at bank holidays and overstretched hospitals. I am thinking she may be incubating shingles again.

 

[Canadian Joanne]

@EJB63 if I were you, I wouldn't say anything about respite at all. I would make all arrangements, pack a bag for her in secret and on the day take her to the home. Use the excuse of going in for a cup of tea or something like that and let the staff take over from there. I would of course explain exactly what I was doing to the staff so they can be aware.

I know this sounds unfeeling but I don't think your mother will understand that she can no longer take care of herself. You are ensuring she will be safe, warm and taken care of.

 

[EJB63]

Hi @EJB63 and a warm welcome to Dementia Talking Point.
I move my mum into care as 'respite' though I knew it would be a permanent move when she was at what sounds a similar stage to your mum. I was off on holiday and my brother was seriously ill in hospital so I knew if she was left at home without me there to sort out day to day problems a crisis was very likely to happen. I just took mum and left her there. It wasn't easy and to say she was cross was an understatement but the alternative would have been worse. Some people have had some success by saying it is a hotel, and certainly in mum's care home they took off their badges and cracked open the prosecco to persuade her that's what it was.

This is a very supportive site and I'm sure others will be along shortly with their ideas and suggestions.

@EJB63 if I were you, I wouldn't say anything about respite at all. I would make all arrangements, pack a bag for her in secret and on the day take her to the home. Use the excuse of going in for a cup of tea or something like that and let the staff take over from there. I would of course explain exactly what I was doing to the staff so they can be aware.

I know this sounds unfeeling but I don't think your mother will understand that she can no longer take care of herself. You are ensuring she will be safe, warm and taken care of.

Thankyou for your thoughts.

I do think that this is the only the way to go as she doesn't realise that she can't look after herself. If we arranged home care there are just so many unknowns and things that could go wrong. You can't plan for every scenario.

There are so many things that she can't do. She's confused the majority of the time. She spends most of her day looking for things she's "put away for safekeeping". The list of her limitations goes on and on. But, the problem is that right now she still has the wherewithall to know that if we arrived at a care home she'd guess why she was there and would refuse to get out of the car. We would like to go to Australia in December and of course she may deteriorate in the next six months and not realise what we were doing.

But, can I take that risk and book flights now for travel in December?

I'm growing more resentful towards her by the day. I know I shouldn't but we just want to see our son.

 

[canary]

But, can I take that risk and book flights now for travel in December?

I think you would have to talk to the care home about whether you can book respite that far in advance. My experience of booking respite is that the beds tend to only get offered if there isnt a permanent resident in them, so the care home will only guarantee respite a few weeks in advance (sometimes less).

 

[B72]

When my mother in law was too vulnerable to continue living in her flat but refused to go into care, we told her the central heating needed repair, moved her, and lived with enormous guilt until she settled down. But there was no alternative, and I don’t think there’s an alternative for you. I’m afraid guilt is part of the course (and abuse).

Good luck with whatever you decide to do. Just remember, there are no perfect solutions, no absolutely right’ way, but lots of ‘wrong’ ways, and we all have to live with the consequences of whatever we decide to do. You’re not alone. Lots of good wishes and sympathy from forum members.

 

[Mydarlingdaughter]

Thankyou for your thoughts.

I do think that this is the only the way to go as she doesn't realise that she can't look after herself. If we arranged home care there are just so many unknowns and things that could go wrong. You can't plan for every scenario.

There are so many things that she can't do. She's confused the majority of the time. She spends most of her day looking for things she's "put away for safekeeping". The list of her limitations goes on and on. But, the problem is that right now she still has the wherewithall to know that if we arrived at a care home she'd guess why she was there and would refuse to get out of the car. We would like to go to Australia in December and of course she may deteriorate in the next six months and not realise what we were doing.

But, can I take that risk and book flights now for travel in December?

I'm growing more resentful towards her by the day. I know I shouldn't but we just want to see our son.

I am wondering whether you have been able to have any involvement from a social worker after her diagnosis in 2021?
You say she had been referred to a memory clinic but refused to attend?
You would like to travel to Australia in December so there is a while to organise things.
If Mum has not had a mental capacity asessment recently and been assessed as lacking capacity, there are some issues around consent if she does not want to go to a respite care, where I assume she could not be able to go out and wander around?
In that case the care home would need a legal authority to detain her. It would make more sense to arrange a home care team to stay with her while you were away. If you get the approriate service they will deal with whatver comes up. And possibly not more expensive.

 

[Karlos]

Hi.
Through our experience we find it best to not tell the farther in-law until the last minute. Even when he goes to the doctor's for an appointment. One time the wife slipped it out by accident the night before and he couldn't settle for hours. We have gone away twice in the last year for a night and her sister has stayed. On the way out we just say she will be round in a bit and his fine.

 

[Muttimuggle]

You know, I had a further think about what you have written and your dilemma, EJB63. I so much think this could be a predicament I might soon face myself, or similar. I had a very big hurdle when I got in carers for my mother. At the start(and it is not that much different now) I got them in for just a medication call so they come at tea time and give her her many medications(including the memory drug Donepezil). She never wanted this, my brother (the spoke in the works who I do not easily communicate with) also said there was nothing wrong with her. I had witnessed her, at least 3 times taking two doses from the daily tablet(so "today's" and "tomorrow's"). She told me adamantly that she had not done this and even when I asked, "Where are they then? Where is the missing dose?" she would just say she didn't know. I was getting nowhere.

So even though this care call, which she had had since December, is only 30 minutes they essentially could stay a shorter time if that was what was required. She complained for a long time and said they did nothing much and that she could do her own tablets. However, she now allows them to wash her tea time dishes....and sometimes help with her microwave meal. It has taken the pressure off me a little. It is, however, " a foot in the door towards acceptance". For example now, if I thought it necessary, I could increase the care for a few days if I couldn't be there- say for example if i got Covid (good excuse but could easily be true!).

The hardest part was setting up the standing order as she is self paying- she was a bit confused about that though which probably helped. Also, as I do not have Power of Attorney - there have been problems for me all along with my brother who has been in disagreement with most things that I have done for mum (and also her diagnosis may now deem her no longer eligible to give this authority anyway). I was able to get help from the care navigator team about all this in the Memory Clinic, over the phone. He told me to ask the bank if I could become a signatory on her current bank account. This made sense because right throughout the pandemic I have been bringing her weekly shop and retrieving, with difficulty, regular cheques from her. It took some time and effort to set up but I wish I had had this bank card of hers sooner. I am now navigating Click and Collect and soon will use it for home delivery for her(She doesn't want this, doesn't want to pay any extra but my time and my feeling matter too don't they?) The more needy Mum becomes in other ways the more i have to think of simplifying the other tasks i do for her like shopping.

So I am not sure if any of this is relevant to your situation. You may give your Mum more care time than I was used to anyway and she may even, you think, need night time care. For me I think the "foot in the door" feels the most useful thing. As time goes on my mother is getting used to someone coming and might even find it a point of contact, a little company, on a lonely day. She would never admit to being lonely but that is my mother- and it comes out in different needy ways.
Good luck. I hope you find a way.

 

[Violet Jane]

Unfortunately, your worry about whether you will physically be able to get your mother into the care home will spoil all the anticipation of the trip. As has been said above, if your mother has capacity then she can’t be forced to go and the home will not be able to keep her there if she wants to leave.

If your mother has not had any paid care at all then, again as has been said above, it might be an idea to get her used to this as it could be a route to arranging live-in care whilst you are away. Live-in care has its complications but it might be the best solution here. If you do decide to arrange this then I would strongly recommend using an agency not just to find a carer but to manage the placement. If you engage or employ a carer yourself then you will have no backup if there are problems (which is not uncommon). It will almost certainly cost more but it will give you peace of mind, which you will want when you are thousands of miles away.

If you do decide to go down the live-in care route then you need to be very honest about your mother’s health and behaviour. Live-in carers are not at the client’s beck and call 24/7 and expect to have a reasonable night’s sleep. If your mother doesn’t go to bed or wanders around the house at night you need to tell the agency, and this might result in the agency saying that you need a ‘waking night’ carer as well, which will add hugely to the cost.

Live-in care is not a cheap option. Depending on a variety of factors it can actually work out more expensive or even much more expensive than a care home.

 

[imthedaughter]

You have coped admirably for years, but I wonder what she will be like by December?
What state will you be in?
How much resentment will have festered?

I put it to you that the time for respite is now.
By late summer (or earlier, respite may become permanent) the residential home may be permanent, and you can go away having given you mum a good amount of time to settle in a home you've selected.

You are a good person and you have done everything you can, but there comes a point where you must do something for you - and it may well be better for your mum in the long term.

Call some homes, select one, pack a bag, go out for coffee or twll her she's off on holiday or whatever you think may work and let the staff do their job, and see how you all get on.