Is the "healthy" partner expected to be the principal carer?

[BogstandardBelle]

Hello

I've posted before about my PILs evolving situation. Both late 70s, MIL has osteoporosis and Parkinsons. She's physically very frail, slow, stooped and vulnerable to falls. She's confused, struggles to manage her medications etc. FIL has become her main carer by default, but I think he's reaching his limits. Physically I don't know how much he has to do for her in terms of showering, toileting, dressing etc. I suspect that she is resistant to being helped - and he's not trained, so can be a bit cack-handed when trying to help her get coats on and off etc. He currently does all the cooking / shopping etc, and they are paying their DD (my SIL to do housework / ironing). Mentally, he's struggling and finding it hard to take on the mental load - MIL was always in charge of all their life admin type stuff, so he's had to take that on at a very late stage.

My feeling is that MIL disabilities are becoming too severe for the family to handle internally and that FIL is no longer able to provide for all her care. I really don't want the burden to fall totally on my SIL - who has form for always putting other people first, to the detriment of her own mental health.

If we ask for a SS assessment, will MIL be assessed on her own needs, irrespective of which family members are around / living with her / available to help? They are terrible at asking for outside help and would much rather have my SIL just sacrifice more and more of her daily time / mental energy to doing stuff for them.

We're in Scotland btw.

As far as I remember my dad asked citizens advise for help with what they could apply for and they were very helpful telling them, and were trained to know what level of information to put in forms. They both were awarded disability allowance (personal and mobility) and I think at least one, if not both, received carers allowance, but that started nearly 20 years ago and things will have changed but I would still start at the CAB for information and to see what they can help with.

In England, and I see no reason why it should be different in Scotland, an assessment of needs is exactly what it says. "A need that is met is still a need". So she will first be assessed on what she needs -help with shopping, cooking, washing, feeding etc - and then they'll look at what needs are being met and what further help needs to be provided.

I would make a start with maybe taking her to her GP explain the situation and go from there. She will need more help as time goes on. I'm speaking from experience.

If same as England, you FIL is also entitled to have a 'carer's assessment' which will look at what he can realistically do and may lead to respite care.

Just bumping this back up, as we’ve just had a few days holiday with the ILs and I can see the problem more clearly. Basically, MIL is increasingly disabled and forgetful / confused etc. And needing a lot of both physical and other assistance. FIL, in theory, should be able to provide this but frankly he’s a rubbish carer in some ways. He doesn’t give her her medication - he expects her to remember to take it - and doesn’t grasp that it’s important that she takes it correctly. He keeps buying things for them and not taking her needs into account (new car with very low bucket seats that she really struggles to get in and out of, new walk-in shower with controls that she can’t turn).

Basically he’s being expected to take on the role of nurse / organiser and he’s totally ill suited for it. She was always the rational one of them, and now she has lost that, he simply doesn’t have the skills to step up and care for them both.

My fear is that social services will take one look at them and say that since there’s a perfectly healthy (albeit waiting for a hip replacement op) spouse present, he should be taking on all the care needs. In theory there’s no reason why he shouldn’t be able to do what’s needed - in practice he’s not up to it: disorganised, selfish, unable to problem solve, forgetful, bad at taking responsibility. But none of these are diagnosable medical reasons not to be a carer.

I should add: he doesn’t really understand anything medical so fails to grasp what the consultants are telling them, and he is in denial / doesn’t understand that these changes are permanent- he seems to think MIL is going to “get better” from Parkinsons and dementia.

I had this with my parents who live in Wales. My mother was reasonably competent but for what ever reason unwilling to help.

Thty struggled for a long while but eventually carer's came in and now my father is in a home.

I never really got the answer to the question you are asking but at the end he was basically neglected and required outside intervention. But it is a pretty shift way for it to play out.

On the plus side he is very stable in the care home and happy enough. My mother feels very guilty about it I think however.

Following with interest. My DF has a bad run of medical complications and now requires a lot of care at home. We’re hoping some of it slowly recoverable. However DM frankly just useless. She’s in good shape (albeit getting on) but cannot problem solve, massively disorganised, cannot prioritise and frankly cant do the caring. Would be useless even helping to wash or give him meds etc. My siblings are I are all doing shifts but it’s not sustainable long term with work and kids. We’re awaiting continuing care assessment and also wonder if there will be an expectation that DM should be a better career. He effectively lives alone in terms of capable care....

Good luck to you OP.

Refer to social services for an assessment. They never expect the partner to assist with personal cares but they probably will expect him to continue doing meals etc.

The medication and timing is crucial for Parkinson's so he needs to get his head round that. There are systems which alert someone when they're supposed to take their meds so they might work for them as a couple. Do you have Parkinson's nurses in your area to discuss this with them?

Unfortunately there are no statutory services to support with "life admin" which is an area lots of people struggle and get overwhelmed with, families usually end up doing it and becoming more overwhelmed and frustrated themselves.

However my last response was based around them having assistance via statutory services, do they have money?

If they do find a good local care agency or private Carer and they will do pretty much whatever is asked of them and often do a lot of the life admin stuff. We have some fantastic private carers in our area that act almost as Case managers for their clients

Another vote for social services assessment pronto. Regular carer visits will help a lot.

There is an expectation that the the healthy partner will do the main amount of caring in the first place. But if they can't or won't for whatever reason, then social care have to provide care-usually care in the home-to cover what the partner isn't doing. You will need to be very clear about your FIL's abilities though-because like everything else this comes down to budget. Care managers have very limited resource and if they see a healthy partner in the home their preferred option is that they do as much of the care as possible. It's sometimes but not always a bit of a battle to get them to see it differently. (The end result of which is that three years down the line you end up with another exhausted sick person that also needs looking after-as well as a much more sick initial sick person iyswim-but that's the sad state of social care just now).

Make sure you are there when the assessment takes place. It's quite valid for you to draw attention to the fact that FIL can't care for her. The assessors are quite used to elderly partners being pretty hopeless at the care ( especially men). It does sound as if she needs visiting carers . They can do things like hygiene, continence care, medications, dressing etc. As PP has mentioned, Parkinsons medications have to be taken at particular times to be effective, so an alarm system might be a good option.

Falls are a big problem with Parkinsons - not only because they lose balance, but also because they lack any insight into their disability. They tend to lurch around without thinking ahead, and falling is a big problem. Your FIL may not be very useful in this circumstance - trying to get someone off the floor is difficult for a young healthy person, but an elderly person can be hopeless at it. A Parkinsons nurse can help to show both of them how to achieve this, but when it happens it can be very difficult. I'd suggest that she ( or both of them) should wear an alarm which can alert relatives / the ambulance for help.

As a PP has mentioned, home admin isn't included in any care package. Either you or someone else in the family will have to take on that job, or things will fall into a heap.

Good luck with getting some care for them.

Been through this, families are expected to provide social care eg cooking, cleaning, managing of bills wherever possible, social services only step in in exceptional circumstances.

For personal care you can request an assessment by the nhs continuing care and if you make the criteria they will find them. Adult social services can also assess for care but they means test and use private agencies these days so if they have over £23k in savings it may be better to ring care agencies yourself and negotiate a rate, or find someone privately. Initially some people accept help 2-3 times a week to shower/bath only, then add visits as required. This soft approach can help introduce the idea of care and allow the person dignity (who wants their husband or child to bathe them).

If at any point you believe they do not have the capacity to make their own decisions then you can go to the court of protection and could appoint a guardian for care and/or money.

Most gp's have a care coordinator system for things like incontinence supplies (you don't need to pay for them) so it's worth getting a meeting with them to discuss concerns about capacity as they deal with it daily.

Thank you for all the advice.

It’s very frustrating. We will definitely get the Parkinson’s nurse out: she will have come across the mismanagement of medication issue before. I think FIL will be okay to say he’s struggling with this particular issue.

@stucknoue

I hear you, but we are so far from getting them to agree to any of this. FIL is basically still expecting MIL to do all her own personal care and just leaves her to it other than turning the shower on for her - but having spent some time with them, I cannot see how she is managing to wash herself or wipe herself after the toilet. But he’s oblivious to this - yet he’s meant to be the main carer.

Selfishly I’m so glad that DH is nothing like his dad!