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Stubborn mules and wobbly arms... - Carers UK Forum

Stubborn mules and wobbly arms...

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Hi,
I am new to this, but I thought I would reach out and see if there's anyone out there who would like to reply. The basic gist is I have a father-in-law with late stage Parkinson's, and a mother-in-law with late stage lung cancer. They are both very proud and not accepting outside help. My husbands siblings aren't great, and so most of the physical caring bits are being done by my husband, and I'm trying to hold everyone together emotionally. Never thought we would be dealing with all of this in our early thirties...especially as we also have two young children. We are generally a positive and happy couple, so I don't want to come across as a moaner! Any thoughts or suggestions of good websites etc to look at welcome.
Thank you for reading.
Welcome to the forum, there are so many stubborn mule carers here!
Firstly, you must set your priorities, and be firm. Your children MUST come first. Then work. Then parents.
Yes, I too know all about parents refusing outside help - my husband died of a massive heart attack at the age of 58, soon after his parents died. Parents will put huge emotional pressure on you, but ultimately, they only have the power over you which you let them have.
Both parents are probably entitled to Attendance Allowance, assuming they are over 65. Have they applied?
Both should have a Needs Assessment from Social Services, and you and your husband should both have Carers Assessments from SSD.
Many of us have found that parents will only change their ways after a crisis, something which leads to a hospital admission. How is MIL at the moment? Is she burying her head in the sand about her diagnosis? Are you in touch with the hospice or a MacMillan nurse or similar? The NHS has a Continuing Healthcare scheme aimed at the terminally ill, this would be a good time to find out more.
I've been a multiple carer, at one time five relatives all entitled to DLA. I would suggest that your husband should see himself as a care manager, not provider. Arranging for others who provide the basic care through Social Services, leaving him to do the things they can't/won't. Also, plan for weekends to be Children Days, when parents wholly have care from others. Using the children as the reason for outside carers, rather than yourselves, is more likely to succeed!
I do find this 'too proud' argument extraordinary - and very selfish. For a start, the 'outside help' has already been paid for in their lifetime's worth of taxes and NI - it is not 'charity' for heaven's sake!

I suspect what it means is 'If I say I'm too proud to accept outside help then my children will have to look after me which is actually what I want'.....

As BB says, hold firm, and insist they accept outside help, or you will not be able to do it either. I feel your role now is to both support your husband, and to tell your inlaws that they must accept outside help, or go without.

The other way of looking at it is this - do you have reliable prognoses as to how long either inlaw is likely to live? I know that sounds brutal, but if you have a reliable estimate, then you could, possibly, take the view 'OK, we'll see this through, and pace ourselves to provide the support ourselves'.

BUT, cancer's a tricky beast - it can beat estimates, or estimates can beat it - ie, some patients last longer than the doctors think they can (and remember, new treatments come on stream all the time, to extend lifespans), but some succumb far more quickly than the doctors think they will (this happened to my husband alas).

One of the ways that folk here get 'proud' parents to accept outside help is to 'sneak it in' - they say they are cleaners, or there to help THEM, (and for a few session they are both there), and hopefully the parents get used to the outside carers, and gradually accept them.

I don't envy you the coming times, as even with outside help, your husband is going to go through the emotional wringer, and you will need to be 'on hand' as he sees his parents out of this life....desperately sad, and it can trigger all sorts of 'back wash' as well. You'll also need to agree how you talk to your children - they can be amazingly 'stoical' about death - I was humbled by how 'strong' my own son was at losing his dad in his early teens.

All the very best possible to you, at what is clearly going to be a very, very difficult time - kind regards, Jenny
Don't let your husband see the need for help as any sort of failure. In fact, it is the opposite, it shows he is doing his very best for them, so that they can stay together at home for as long as possible. However, maybe he needs to explain to them that the time is fast approaching where they either accept care from others in their own home, or go into a home where they are cared for together. That "doing nothing" (other than expecting you both to help) is NO LONGER AN OPTION.
Also, have they streamlined their own home as much as possible to reduce the work required to maintain it? Dishwasher? Washer dryer? Put away ornaments to make cleaning easier? Would they accept a cleaner (carer in disguise) if you were present to start with? Or would they accept a "nurse" in uniform easier than a cleaner or carer?