Feeling totally conflicted

[jojo2018]

Hello,

Quick summary: My MIL has been diagnosed with suspected dementia. A cruel blow after dealing with bone cancer for 5 years. She is 75, lives alone (bereaved) and my husband (her only son) and I live overseas 8 months a year, staying with her a few months a year depending on how much she needs us.

Since getting the suspected diagnosis we arranged daily carers (to her chagrin), removed her car keys (on Drs orders, but to much upset and anger), and did some practical things to make her home as safe as possible.

However, over the past few weeks of living with her, my husband has seen her forget how to use all major appliances, get her complex medication wrong (even with carer there, which is frustrating as that was their main job), forget she's not supposed to drive and look for her keys, and today - fall over in the house and hurt herself (though she denies it now).

He has decided to stay with her indefinitely - not return to work with me overseas - until things are ok. Which I fully support - she seems too vulnerable to leave right now. But... things won't get better, will they? And the longer he stays with her, the more upset and down he gets, until the point where I am worried about his mental health too.

She is generally content and ok to live her daily routines (walking in the park, shopping, feeding the birds and squirrels) but - the big threats remain - of her getting the medication wrong (even with help), falling suddenly with no-one there, forgetting to eat, perhaps even refusing to accept the carers one day.

Under these circumstances, should she absolutely not be living alone? Are we doing the right things? I don't know what to do, or what to advise, or whether to back off and let him make the choices alone?

I feel a bit panicked at the thought of just leaving the two of them and going back to work - where I will be fine and our business will survive with just me for the time being - but they will both be suffering (she will hate him being there if she suspects its to look after her, and already he is getting under her feet as she likes her own ways).

I am trying to stay calm. Wishing someone could give some direct answers and advice, though I know every situation is different and it's very unlikely anyone can!

 

[karaokePete]

Have you involved the Local Authority Adult Services at all? It does sound like a needs assessment is required to see if all required assistance can be put in place to enable independent living, if still possible. If you call the help line they may be able to provide details for you.
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.

Helpline opening hours:
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[jojo2018]

Have you involved the Local Authority Adult Services at all? It does sound like a needs assessment is required to see if all required assistance can be put in place to enable independent living, if still possible. If you call the help line they may be able to provide details for you.
National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.

Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

Thanks! Will call now. We have her cancer Drs involved, and her GP, and she has just had a brain scan which I assume leads to some kind of support / advice, but we haven't contacted the LA. Thanks for the details.

 

[Beate]

No, she won't get better, she will get progressively worse. Your husband will find himself trapped with her for years unless you get SS involved. If it's decided she cannot live on her own anymore, you have to consider a care home. Your husband cannot be expected to care for her indefinitely, especially if his life is usually abroad with you. He has to make it very clear to them duty of care lies with them and that any care he does now is only going to be temporary until they have put measures into place to keep her safe.

 

[jojo2018]

No, she won't get better, she will get progressively worse. Your husband will find himself trapped with her for years unless you get SS involved. If it's decided she cannot live on her own anymore, you have to consider a care home. Your husband cannot be expected to care for her indefinitely, especially if his life is usually abroad with you. He has to make it very clear to them duty of care lies with them and that any care he does now is only going to be temporary until they have put measures into place to keep her safe.

Thanks for the clear and direct response, it really helps. I will suggest to him liaising with SS, or perhaps call myself to see how the land lies. I go back in just a week so it's urgent to discuss things with him before I go, and get a plan in place, based on the assumption that things aren't going to get suddenly easier for her. Thanks again.

 

[Rosettastone57]

No, she won't get better, she will get progressively worse. Your husband will find himself trapped with her for years unless you get SS involved. If it's decided she cannot live on her own anymore, you have to consider a care home. Your husband cannot be expected to care for her indefinitely, especially if his life is usually abroad with you. He has to make it very clear to them duty of care lies with them and that any care he does now is only going to be temporary until they have put measures into place to keep her safe.

I agree with Beate. Your husband may think there is some legal obligation on his part to care for MIL but in fact there isn't. He is entitled to a life of his own with you. I understand that he wants to help but if it's anything like my MIL he may find her neediness and dependency overwhelming. We only live 10 mins drive away from MIL but we still wouldn't do 24 hr care.

 

[jojo2018]

I agree with Beate. Your husband may think there is some legal obligation on his part to care for MIL but in fact there isn't. He is entitled to a life of his own with you. I understand that he wants to help but if it's anything like my MIL he may find her neediness and dependency overwhelming. We only live 10 mins drive away from MIL but we still wouldn't do 24 hr care.

Thanks! It's more a feeling of fear than legal obligation - the fear of something going wrong if he leaves. It feels so wrong to fly off and leave her vulnerable - but also so wrong to leave them there going slowly mad with each other. She is needy while also valuing her independence, if that makes any sense at all. Thanks for taking the time to respond it's helpful to hear other people's stories as well as their views x

 

[Rosettastone57]

Thanks! It's more a feeling of fear than legal obligation - the fear of something going wrong if he leaves. It feels so wrong to fly off and leave her vulnerable - but also so wrong to leave them there going slowly mad with each other. She is needy while also valuing her independence, if that makes any sense at all. Thanks for taking the time to respond it's helpful to hear other people's stories as well as their views x

I understand that fear as well in fact I have more fear about my mother-in-law being vulnerable than my husband does. We have no one to help us no other family members and my husband sister lives in America and has no contact with her mother. But things are achievable even if you go abroad I appreciate your situation is a little different but we went to the USA for 4 weeks last year. We left my mother-in-law totally alone other than with the carers she is self funding. Although she hasn't had an official social service assessment I phoned Social Services before we went to let them know the situation should there be an emergency. This may sound harsh but it was the only way we could go abroad see my family in the USA and have a life of our own.

The care agency basically did everything from all food preparation sorting out her medication making sure she was ok in the evening and doing all the shopping. It requires quite a bit of planning in advance because obviously the care agency could not provide carers at short notice for many of these tasks. The particular agency I use has signed up to an app which I have on my smartphone they simply write what is happening on the app I get access to it and I can respond quickly either by email or using the app to sort out things with the agency even with a 5 hour time difference.

My mother-in-law can't use the washing machine either very easily normally if we're at home I do her laundry but when we were away again the agency had to put the washing in the machine and sort it out for her. Obviously this requires several visits which I appreciate the cost goes up but we felt we had no choice. Anything more major such as home repairs for example had to wait till we came back from the USA which I appreciate is a little different in your case. To stop her getting more anxious because we were away I signed up to an app in which I can send postcards out to her at short notice and upload pictures of ourselves and the family members so she wouldn't feel isolated. We have her post redirected to us so we asked our house sitter to sift through the post and any postcards for her he would simply go round and put through the door without having to engage with her. We set up a befriending service to visit her from our local community area and they came twice a week to make sure she was ok. Any financial issues such as paying bills etc we did online through my lasting power of attorney. All the milk gets delivered and we set up a delivery once a week of frozen meals which the carers could use to make her a lunch

Of course my mother-in-law wasn't very happy about these arrangements she never wanted us to go away in the first place . She was rude aggressive and abusive but we just ignored it.

I'm not saying that I have all the answers and we fact we're going away again this year so things might not work out quite so well

What do other people do who have no family members to look out for them?

 

[jojo2018]

I understand that fear as well in fact I have more fear about my mother-in-law being vulnerable than my husband does. We have no one to help us no other family members and my husband sister lives in America and has no contact with her mother. But things are achievable even if you go abroad I appreciate your situation is a little different but we went to the USA for 4 weeks last year. We left my mother-in-law totally alone other than with the carers she is self funding. Although she hasn't had an official social service assessment I phoned Social Services before we went to let them know the situation should there be an emergency. This may sound harsh but it was the only way we could go abroad see my family in the USA and have a life of our own.

The care agency basically did everything from all food preparation sorting out her medication making sure she was ok in the evening and doing all the shopping. It requires quite a bit of planning in advance because obviously the care agency could not provide carers at short notice for many of these tasks. The particular agency I use has signed up to an app which I have on my smartphone they simply write what is happening on the app I get access to it and I can respond quickly either by email or using the app to sort out things with the agency even with a 5 hour time difference.

My mother-in-law can't use the washing machine either very easily normally if we're at home I do her laundry but when we were away again the agency had to put the washing in the machine and sort it out for her. Obviously this requires several visits which I appreciate the cost goes up but we felt we had no choice. Anything more major such as home repairs for example had to wait till we came back from the USA which I appreciate is a little different in your case. To stop her getting more anxious because we were away I signed up to an app in which I can send postcards out to her at short notice and upload pictures of ourselves and the family members so she wouldn't feel isolated. We have her post redirected to us so we asked our house sitter to sift through the post and any postcards for her he would simply go round and put through the door without having to engage with her. We set up a befriending service to visit her from our local community area and they came twice a week to make sure she was ok. Any financial issues such as paying bills etc we did online through my lasting power of attorney. All the milk gets delivered and we set up a delivery once a week of frozen meals which the carers could use to make her a lunch

Of course my mother-in-law wasn't very happy about these arrangements she never wanted us to go away in the first place . She was rude aggressive and abusive but we just ignored it.

I'm not saying that I have all the answers and we fact we're going away again this year so things might not work out quite so well

What do other people do who have no family members to look out for them?

Thanks for sharing this, and it sounds like you do an awful lot to make sure she is ok. And you're right - what on earth do people do if they have no-one? A worrying thought.

Your experience echos ours in several ways, and there are a few things you are doing which I hope we can implement. I have considered moving back to the UK, but even then would not live with her 24-7 and would try to find somewhere nearby, so much of the support would still be required. At the moment it would give peace of mind to be nearby though. Just very tricky workwise and sad to leave what we have built overseas. We have lots of thinking to do.

 

[Amy in the US]

Jojo, I'm sorry to hear all this. You must both be having a very difficult and trying time.

As you say, no, MIL will not get better. She will get worse. How much worse and exactly when, nobody knows, and that makes it difficult to plan. (Challenging for those of us who like to know and like to plan. If I could only get a dementia crystal ball, I'd be thrilled.)

If you want my personal opinion, I would say, from what you describe, at a bare minimum, someone else needs to oversee her finances, mail, bills, medications, meals, and medical appointments, and make sure she can't wander, burn the house down, or drive. I would say that she shouldn't be unsupervised, especially if being alone puts her in any danger and/or causes anxiety and distress, as it so often does.

I am speaking from my personal experience with my mother, who lived alone with dementia for far too long, suffered financial and health consequences, and endangered herself and others. I still regret that it wasn't a different path. After a crisis, she was hospitalized (sectioned) and then moved to a care home, where she has done very well.

I don't know what will be right for your MIL.

On a practical note: as she has had cancer, I wonder if the MacMillan nurses could be a resource, as well as the Alzheimer's Society and Age UK and the LA/SS? I have heard such good things about them here.

None of this is easy and I'm so sorry. Do talk with your husband, and keep posting. My best wishes to you all.

 

[Amy in the US]

One unsolicited bit of information I forgot regarding MIL falling and later denying the fall. She may not remember the fall (memory impairment), and/or she may have anosognosia. That is something many PWDs (persons with dementia) have, where the damage to their brain means they are not able to comprehend or understand there is anything wrong with them. Coupled with memory loss, if present, it can be puzzling and confounding for family and carers to cope with. It's not denial in the classic sense of understanding something but refusing to acknowledge or accept it, it's brain damage that doesn't permit the comprehension, and makes for a lack of insight about their condition.

I fear that is clear as mud, and upsetting as well, but it's an important point as it may help clarify some of her behaviour. It explained so much for me, when I finally learnt about it.

 

[jojo2018]

Jojo, I'm sorry to hear all this. You must both be having a very difficult and trying time.

As you say, no, MIL will not get better. She will get worse. How much worse and exactly when, nobody knows, and that makes it difficult to plan. (Challenging for those of us who like to know and like to plan. If I could only get a dementia crystal ball, I'd be thrilled.)

If you want my personal opinion, I would say, from what you describe, at a bare minimum, someone else needs to oversee her finances, mail, bills, medications, meals, and medical appointments, and make sure she can't wander, burn the house down, or drive. I would say that she shouldn't be unsupervised, especially if being alone puts her in any danger and/or causes anxiety and distress, as it so often does.

I am speaking from my personal experience with my mother, who lived alone with dementia for far too long, suffered financial and health consequences, and endangered herself and others. I still regret that it wasn't a different path. After a crisis, she was hospitalized (sectioned) and then moved to a care home, where she has done very well.

I don't know what will be right for your MIL.

On a practical note: as she has had cancer, I wonder if the MacMillan nurses could be a resource, as well as the Alzheimer's Society and Age UK and the LA/SS? I have heard such good things about them here.

None of this is easy and I'm so sorry. Do talk with your husband, and keep posting. My best wishes to you all.

Thanks for your kind words Amy, your viewpoint is aligned with my husband, who doesn't think she should be alone, and increasingly with mine - and you have the experience to back it up so it is very much appreciated. I'm sorry to hear what you have been through too. One challenge for us is her refusal to accept there is anything wrong and - also - the fear that we take away her independence too soon (for example, moving her to a home, though as you say people can do well there). She is a tough lady, has overcome a lot, and prides herself on that. Even bringing in a carer for a short visit has caused a lot of resistance, and we are now attempting to white lie our way into getting a second visit each day, at great difficulty.
All the finance and medical management we do / are starting to do - but it's that daily supervision she won't have once he leaves.
You're right she has had great care for her cancer, and the fantastic support of MacMillan, but there is a limit to what they can do - and they stopped allowing her medication once they suspected her memory issues until my husband came back to manage it - with the help of private carers. Their fear that she will take too much / too little is totally fair, but they don't have the resources to help - the waiting list for home visits was too long.
I just found out that there was a SS visit too (I didn't know till today) but they said the level of support they offer has been limited due to cutbacks - and also because my MIL has savings that are over the threshold they could not fund anything anyway... So OH is staying, for now, and if he gets carers a few times a day, and confidence in their ability to help her, he will join me overseas until we both come back again in summer.
If he doesn't get that confidence, I just don't know, but a care home could be one of the options, which is a scary thought indeed!
Thanks again and sorry for the rambling, Jo x

 

[Amy in the US]

I didn't think you were rambling, and no worries.

I do understand that none of this is easy, and when the PWD has some/fluctuating capacity, well, it can be very challenging.

I'm sure this is not what you want to hear, nor to add to your to-do list, but might you/your husband quietly visit some care homes, and perhaps even place her on the waiting list, now? It's preferable to choose a place when there isn't a crisis or time crunch. Of course that may not be feasible, and again, I don't mean to upset you, but it is something to consider.

I'm not completely sure how the finances work, but if MIL is self funding for now, I think you are free to hire whatever agency and carers you wish. I am sure someone here will correct me if that's wrong. I don't know that this speeds things up significantly? I suppose it depends on what is available in MIL's area.

Another option might be a day centre, so perhaps find out what is in the area? That would provide structure and some support and social activities, as well as some extra eyes on her. Some have transportation available.

This must all be a huge worry and I am sorry you have to deal with this.

 

[jojo2018]

I didn't think you were rambling, and no worries.

I do understand that none of this is easy, and when the PWD has some/fluctuating capacity, well, it can be very challenging.

I'm sure this is not what you want to hear, nor to add to your to-do list, but might you/your husband quietly visit some care homes, and perhaps even place her on the waiting list, now? It's preferable to choose a place when there isn't a crisis or time crunch. Of course that may not be feasible, and again, I don't mean to upset you, but it is something to consider.

I'm not completely sure how the finances work, but if MIL is self funding for now, I think you are free to hire whatever agency and carers you wish. I am sure someone here will correct me if that's wrong. I don't know that this speeds things up significantly? I suppose it depends on what is available in MIL's area.

Another option might be a day centre, so perhaps find out what is in the area? That would provide structure and some support and social activities, as well as some extra eyes on her. Some have transportation available.

This must all be a huge worry and I am sorry you have to deal with this.

Thanks Amy, yes with self-funding we have a lot more options in terms of when carers come, how they work, the level of information, etc. which makes things easier. This level of support is affordable for her without our help.

A day centre is a really good idea, I wonder if they have them around here. She is a sociable lady, people can annoy her easily but she is always very open to meeting new friends, and quite confident at that.

I actually called a care home - felt so guilty doing it! - but you make a good point about being prepared now rather than waiting for a crisis. Seems again if we self-fund it's easy to organise it, but then of course we have to work out finances. I don't know how families manage when parents don't have savings - we are so lucky my FIL had a good job, pension and some savings - with our support too this means she at least has options (if she can accept them).

Tomorrow I'm setting up an online food order, readying myself for all the arguments this will bring.
Good night and hope all is well with you,
Jo

 

[Amy in the US]

Jo, hope you get some sleep.

In the UK, my understanding is that there is no burden of care for another individual, that this rests with the state. Others here can speak to this more fully but you should not need to pay for her care; someone please correct me if I'm wrong. If she's not in the UK, my apologies.

 

[Amy in the US]

Oh, and I've heard good things about ?Wellshire Farm Foods, for delivered frozen ready meals, if that would be of use.

 

[canary]

Jo, hope you get some sleep.

In the UK, my understanding is that there is no burden of care for another individual, that this rests with the state. Others here can speak to this more fully but you should not need to pay for her care; someone please correct me if I'm wrong. If she's not in the UK, my apologies.

Im sure you know this already Amy, but just to clarify:
The burden of care does indeed rest with the state (ie no-one can be forced to care for another person), but in England (not sure about the rest) the state does not automatically pay for care. Nevertheless, you shouldnt pay for it - it is the person with dementias saving etc which should pay. If there is savings of over £24,000 then they will be self-funding. Once the savings get below this level then the Local Authority will start to pay towards the fees.

 

[jojo2018]

Im sure you know this already Amy, but just to clarify:
The burden of care does indeed rest with the state (ie no-one can be forced to care for another person), but in England (not sure about the rest) the state does not automatically pay for care. Nevertheless, you shouldnt pay for it - it is the person with dementias saving etc which should pay. If there is savings of over £24,000 then they will be self-funding. Once the savings get below this level then the Local Authority will start to pay towards the fees.

Thanks Amy and Canary, thankfully my MIL has more than 24k in savings, almost double, so she will fund for now. But we are expecting to use our own savings once hers run out - as a care home (a nice one in an area she would like) costs a lot!! I assume if the state helps they would dictate where she went, which would be fair under the circumstances - or maybe they would offer some support towards the fee and we would pay the rest? But I assume we need to financially plan for all eventualities.
I'm feeling a bit better today - the new bathroom is in - she loves it (so far!) and it's much safer. We had a sad talk about her not being able to drive, but the sun is out, and we will walk to the shops later and taxi back to give her practice, as well as setting up an online order for the basics. She is in good spirits despite everything today - I think the sun does that to us Brits - I hope you guys are having a nice day

 

[jojo2018]

Oh, and I've heard good things about ?Wellshire Farm Foods, for delivered frozen ready meals, if that would be of use.

Yes! My mum (on my side) told me about this too! Ok now with 2 recommendations I will have to take a proper look - thanks Amy

 

[canary]

or maybe they would offer some support towards the fee and we would pay the rest?

Yes this is exactly what would happen. The LA is duty bound to find a care home covered by their contribution once savings have run down, but if the family wanted to then they could pay the extra for a home of their choice (known as "top-up fees")
Much better to save your money until top-up fees are required.
BTW if your mum also owns her home (you said she lived alone) then the value of the home is also considered as part of her saving once she gets to the care home stage - it is exempt all the while she lives there.