Family disagreement on respite

[Sporran_100]

Hello everyone,

We hope you are all well?

We are having some family issues in regards to respite care for our mum that we are full time carers for and hope to get some advice.

My 84 year old Mother In Law was diagnosed with Alzheimers around 5 years ago and was living with dad . During the first 2 years mum got worse quickly and dad was struggling to understand the condition and also how to support mum. My wife and I supported him as much as we can but he was really struggling and sadly, 2 and half years ago dad passed away suddenly, My wife and I were living in a rented house but were making plans to buy a home and also planning to adopt a child but when dad passed away, mum became our prority. We had a chat with her and asked her if she would like us to move in with her. She was so pleased that we would all live together and we dropped everything and moved in.

Mum has another daughter and 2 other daughters from a previous marrage. The other 2 daughters dont really have a relationship with mum. We spoke to my wifes sister who lives a 30 minute drive away about us moving in and she was happy also about this as she said she would visit mum for a few hours every friday but thats all she can do. We did try to discuss with her just after moving in that in the future when we need a break or holiday and could she help out with this and we were told, i have my son and now you have mum so they cant help with staying with mum if we need a holiday. After some time had past, the daughter refused to stay at mums even for 1 night but did agree to have mum for upto 3 days but arranging breaks has always been a battle. As mum has gotten worse and because Im a support worker, my self and my wife decided if needed i would reduce work to be at home with mum as now she cant really be left alone for more than an hour. I went from full time, to 3 days a week to now 3 nights a week as this means someone is always home with mum.

Whilst we get time to do seperate things from each other , we have never got much if any time as a married couple and just had what breaks the other sister would allow us to have. Our marrige has started to become affected by this and we realised that we need some regular time away from caring. We managed to convince the other sister to have mum once a month but they could only have her from 2pm until 10am the next day and we always must drop her off and pick her up. She also said that she may not being able to have mum any longer than a night because her care needs are getting more, which we understand. Mum has never liked going there and gets very bothered just before she goes and isnt right when she comes home. They dont really prioritise mum when she is there and we think this is the reason she doesnt like going. These nights happened for 3 occasions and we just stayed at home, got a takeaway. The short time with the weight of not being carers was just what we needed even for just afew hours. However , the sister then said she was going to charge mum £20 to stay with them to cover bills and washing bedding! Honestly , they are not short of money. This did make us very angry and feel disgusted with her behaviour and we said we would rather not have a break than them change mum to stay so cancelled that.

This situation made us realise that we need to look at some more regular arrangements and have now arranged for a friend who is also a support worker to stay once a month. We attend a group for carers and it was suggested to us to get an assessment for longer respite. We looked into this and have this very soon. The thought being that we always have to go away each time we want a break for a night but what if we want a week away or even a week at home without taking time off work and that a break away for mum from us would also be a good thing.
None of the other sisters will have mum for a week or stay at mums whilst we go away but have strongly opposed the idea of mum going into respite as they feel it is not ok for mum to be put somewhere and moved out of her home just because we want a break. They see it as a negative thing and not that mum may actually enjoy the expericence and it could be positive for her and also us.

We feel that to continue to support mum 24hrs a day every day as we have done for the last 2 years, we need breaks but they are making us feel like bad people for wanting and actually needing this. My wife and I always agreed that if caring for mum affected our marriage that we would maybe have to look at her going into a care home . This is not something we want to happen currently and we believe that breaks from caring will allow us to rechange and be at our best to look after mum.

My wife and her sister are power of attorney for mum but it was put in the arrangement many years ago that they can make seperate decisions.

Sorry for the long post but i guess our question is, can my wife and I make the decision to put mum into respite without the other sisters permission as we are the full time carers? Should we seek legal advise?

Also, if being paid for private until the Carers assessment has been done, should mum or us pay for the respite. Mum does have money to cover it and we dont earn a great deal between us?

Mum has been declared as not having capacity and when we have explained to her about respite she seems ok with it, hard to know if she fully understands though.

Thank you for reading and any thoughts or advice would be appreciated.

Mark & Becky

 

[2ndAlto]

Welcome to the forum Mark and Becky

You have to wonder about families sometimes don't you? Not prepared to help and opposed to any solution which might cost money.

Of course you and your wife need regular breaks and if the sisters aren't prepared to do their part then respite in a care home is the obvious answer. I'm not in the UK so can't make any comments re the legal aspect of who pays for her care.

 

[Sporran_100]

Hi 2ndAlto,

Thank you for your welcome. It's great we have found the forum and speak to others who maybe in similar situations and share advice.

We honestly think that the sister would want mum in a home ASAP as she would get some of the house money from her dad's part of the will. If only they invested more time in spending quality time with mum and trusted us to the care side, life would be so much simpler. It's been hard since day 1 but my wife and I feel so lucky to have this precious time mum.

 

[2ndAlto]

I did wonder if the whole thing boiled down to £££ - and who thinks they might miss out. Where there's a will there's a relative....

 

[Campsie]

Hello and welcome Mark and Becky, I truly believe that you both would benefit greatly from a week at least of respite. You need to recharge your batteries in order to give your best to your mum. Not once in your post have you complained about the care aspect of what you are both doing. It is to be commended. If you don't get some time to yourselves you could well become resentful, worn out and stressed with your current lifestyle. That might then make you feel that you're not doing your very best for your mum. You really deserve a spell of 'normality' and some care free time to yourselves. All three of you would gain some benefit from it. It never fails to amaze me how 'others' can be critical, neglectful, selfish and mostly conspicuous by their absence. It happens all the time as lots of people on this forum will testify to. Somehow whatever the financial cost you can make it happen. I wish you well.

 

[canary]

So the relatives feel they can't cope with looking after her for even one night, but they expect you to do it permanently with no breaks at all?

In my books, people who are not willing to help with the hands on care have not earned the right to tell you what to do

 

[2ndAlto]

So the relatives feel they can't cope with looking after her for even one night, but they expect you to do it permanently with no breaks at all?

In my books, people who are not willing to help with the hands on care have not earned the right to tell you what to do

So true @canary and usually they have absolutely NO IDEA.

 

[Grannie G]

Welcome to the forum @Sporran_100

can my wife and I make the decision to put mum into respite without the other sisters permission as we are the full time carers? Should we seek legal advise?

I think the support forum will be able to advise you on this before you take expensive legal advice. The line is open today 10am - 4pm

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

should mum or us pay for the respite.

Mum can pay for respite.

 

[northumbrian_k]

I was sole carer for my wife and 2 key things made it possible for me to carry on. The first was engaging a carer/befriender for a few hours one day a week. The second was respite stays varying from 3 to 10 nights. There may be other options such as day centres too.

Ignore what people who don't contribute to care say. You deserve breaks from caring and doing so without relying on the minimal, grudged 'help' of family will be a far better way.

 

[Sporran_100]

Thank you so much everyone for the reassurance and advice and kind words. It's great to here from everyone about their own experiences and thoughts on the issue. To be honest, we had started to think that we were the issue but you have all put our minds at rest that its not the case.

We struggle to understand how others can be happy to dip in 3 hours a week and not much more. Not really spend quality time with mum and then think they can have the full facts of what's it actually like be carers or understand that this actually about us and our wellbeing . We have always seen it as a privilege to be able to spend all our time me mum and whilst it can be hard at times the memories we have and will continue to build with her are worth all the effort.

Have a great day everyone

 

[Sporran_100]

Welcome to the forum @Sporran_100


I think the support forum will be able to advise you on this before you take expensive legal advice. The line is open today 10am - 4pm


Mum can pay for respite.

Thanks for the number Grannie G, I have called them and they were brilliant. Whilst they can not give legal advice, their understanding of the POA not being joint and they can make individual decisions, means she can not stop us from using a respite service and she would have to try and contest it as not being in mum's best interests. While mum may not enjoy the time or she might, it's completely in her best interests to ensure that we have a break to keep her in her home as long as possible and if we want that at home rather than having to go away then that's what needs to happen.

 

[Casbow]

When my Husband was alive we had a social worker that visited. She was a very understanding person and wrote everything in a report when ever she she visited. That led to my husband having a male visitor Ask to sit for 2 hours every week and look after him , so that I could go out to get my hair done and do some shopping or whatever I wanted to do. This made a big difference and something to look forward to. The chap that did that job then offered to come and sit with my husband if I wanted to go out in the evening. That allowed me to go to a wedding although I did not stay out too long. My choice. I did pay for that but not the 2 ours a week. Well I don't remember paying.! Ask to see what help you can get. Good luck. Carol B.

 

[SAP]

If the two POAs can make decisions separately then there is no reason why your wife can’t make a decision on the respite care on her own. The sticking point will be if your MIL has mental capacity or not and if she does, is she willing to go into respite. Whilst the two attorneys can make decisions regarding finances at any point , unless the LPA states otherwise, no one can make health and welfare decisions until mental capacity has been determined as lacking.

 

[Kristo]

This makes me feel so frustrated on your behalf - if they don’t want her to have respite then they should have her to stay for a whole week instead. They would soon change their minds if they had to do everything you have been doing. Walk a mile in your shoes and all that. My best advice is for you to continue making decisions that are best for your mum, and not worry about what anyone else thinks (easier said than done I know!). We have all been where you are and we all support you. Good luck x

 

[Sporran_100]

When my Husband was alive we had a social worker that visited. She was a very understanding person and wrote everything in a report when ever she she visited. That led to my husband having a male visitor Ask to sit for 2 hours every week and look after him , so that I could go out to get my hair done and do some shopping or whatever I wanted to do. This made a big difference and something to look forward to. The chap that did that job then offered to come and sit with my husband if I wanted to go out in the evening. That allowed me to go to a wedding although I did not stay out too long. My choice. I did pay for that but not the 2 ours a week. Well I don't remember paying.! Ask to see what help you can get. Good luck. Carol B.

Hi Casbow,

Many thanks we have an Carers Review very soon so will find out what we and Mum is entitled to in regards to respite. All the best.

 

[Sporran_100]

If the two POAs can make decisions separately then there is no reason why your wife can’t make a decision on the respite care on her own. The sticking point will be if your MIL has mental capacity or not and if she does, is she willing to go into respite. Whilst the two attorneys can make decisions regarding finances at any point , unless the LPA states otherwise, no one can make health and welfare decisions until mental capacity has been determined as lacking.

Hi SAP,

Thanks for your advice.

The social worker for our Carers Assessment will do a Capacity assessment on mum when they visit. It's been 2 years since her last one and she has changed so much in that time and in my opinion has lost her capacity. But of course we need to get her reviewed by a professional.

 

[Sporran_100]

This makes me feel so frustrated on your behalf - if they don’t want her to have respite then they should have her to stay for a whole week instead. They would soon change their minds if they had to do everything you have been doing. Walk a mile in your shoes and all that. My best advice is for you to continue making decisions that are best for your mum, and not worry about what anyone else thinks (easier said than done I know!). We have all been where you are and we all support you. Good luck x

Hi Kristo,

We have put it to them, would they prefer mum to be in her own home and occasionally go into respite or be in a residential home permanently? They have not responded to that question. Many thanks to you and everyone for the kind words and support.

 

[Sporran_100]

Hi all, so a few weeks past since we last had contact with my wifes sister about this and today she messaged stating again that she is not happy with mum going into respite at this point of her dementia. Which is a joke because she has no idea of the level of her own mothers health because she never asks us how it is to care for her mother. She is now actually speaking to distant family members and trying to get them to stay with mum at home, again saying that we shouldn't have a break at home and continue to work and not use up all of our limited holiday.These people have not seen mum in years, we think it's so irresponsible of her to think that these distant family members could suddenly come in and help mum with her care needs. I'm actually a supporter worker and find it hard, I couldn't imagine just being dumped into this and being expected to know exactly how mum needs to be cared for, which changes every day. We hate that this is now getting to a point were the small bit of relationship we have with her will totally breakdown.

All we want is a break at home, knowing mum is being cared for by professionals not just distant family members. The sister is doing everything she can to recruit these other people but will not do it herself and would never have mum for a week as that would mean sacrificing some holiday to care for her mum.

Such as small thing of us wanting a break at home is turning into a family battle. We would never do anything that would impact mum because our whole life is about being there to make sure mum has a wonderful life in her own home untill the point when it's no longer possible. Her sister is making us now feel like we are doing something wrong.

 

[cymbid]

I am at a loss as to why you are waiting for this relative to make the decision. Just go ahead and arrange the respite.

 

[pvl]

My husband and I are in very much the same situation as you. Everyone has an opinion about respite and care homes but nobody is prepared to help. Please please please stop worrying what other people think. You are doing an amazing thing looking after your mum and trying to keep her at home as long as possible but you are also entitled to a life that isn't wrapped around your mum's needs. I can tell you from bitter experience that if you don't take the time to focus on yourselves individually and as a couple that you are likely to regret it. Looking after a loved one with dementia greatly reduces the time and energy you have to spend on the person who is by your side. Don't let anyone tell you that taking a break is selfish or not in your mother's best interests. If your mother has the funds to pay for respite then that is where the money should come from and that's what should happen. The idea of having people who are virtual strangers in her home not knowing how to care for her and not knowing what makes her happy is ludicrous and should be treated as such. You are allowed to have your own needs and anyone who doesn't help with your mum should just butt out.