How much are people willing to sacrifice with care for the elderly?

[mids2019]

We are probably in a situation familiar with a lot of people here with frail parent (fil) as well as teenage children and jobs.

the question is how far do you go to support the elderly parent given traditionalism have to make large sacrifices at home? Do people get to a stage of costing a very crisp immobile parent so often that family life becomes increasingly strained but from an emotional level feel little choice? Do people give up employment to look after the elderly and is there a societal expectation that children especially women should become essentially full time carers?

How do you go about making decisions about how to organise your lives with change?

Is your brother trying to preserve his inheritance at the expense of your health?

It’s tough enough without the disagreements between siblings/ family members. Is your DB then happy to move in and provide all the care himself?
I agree re the wider impacts. With a FT job, life and caring responsibilities, I feel guilty with the reduced time I have for DC (and to a lesser extent DH) and am really conscious of the little time I have with DC before they fly the nest. It builds up resentment.

@JumpLeadsForTwo @attishoo @JenniferBooth My brother and mum know I will not make that promise, and I have encouraged the benefits for mum (as well as us) from other options. I absolutely will not be sacrificing my health and time with my own family to the extent that would be needed if I did agree to share caring for mum. He claims he will be sole carer if necessary but I really don't think he has thought through what this really means and how the disease will progress. If he does see this through I can see that his partner may leave him (it would mean moving in with Mum full time and I can't imagine anyone being happy to commit to that indefinitely), he will have very little time for his small child (quite possibly for his whole childhood) and he won't be able to work when mum's care needs increase. I really can't see how that is better than having mum cared for in a home and visiting her regularly.

@enoughbananas mil currently needs overnight care - sister is doing it because she doesn't want mil to go into a home if mil doesn't want to - when does anyone want to? Sil has put enormous pressure on her siblings to share the overnight burden with her - but they have said no, so now we wait to see how long sil's health holds out - she is exhausted but she still won't give up - imagine putting your kids through that?

We have a similar situation. DM and brother are adamant that Mum does not want to go in to a care home or have 'outsiders' in her home and it is wrong to force her to do something she doesn't want to do. Ignoring the fact that the only way to avoid her doing something she doesn't want to do is for another family member (or members) to sacrifice what they want to do with years of their life/s. Like you, the sibling who refuses to consider a care home is acting as though that is not even an option and blames me (and a few members of the extended family) for the fact that he is already having to put himself out more than he really wants to. I won't do it because a) I don't want to sacrifice myself that way, b) I think once she gets used to it mum would be happier in a home with people around her all the time, but not just one or 2 people burning themselves out and doing nothing properly, and c) more help from other family members will just delay the inevitable move in to care so when it happens she will be less able to deal with the change and more of us will be burned out along the way.

Couldn’t agree more. My dad is about to go into a care home from hospital following some falls as a result of poor mobility and rapidly advancing vascular dementia. People are shocked when I say he’s going into a home but the reality is my mum is struggling with the care, physically and mentally. I don’t believe my dad is getting the best care at home and it’s also no life for my mum. I feel good about him being in a really nice, and local, nursing home. The price is eye watering but I don’t feel there’s a choice.

Dh and I added a paragraph to our Health and Welfare Ps of A that goes roughly,

‘If I should develop dementia, or my other condition where I am unable both to care for myself, and speak - with full mental capacity - for myself, then I emphatically do not want any life-saving or life-prolonging treatment. I ask for palliative care only.’

🤞that should sort out any ‘striving to keep alive’.

Does anyone find that after raising children and looking forward to more freedom you are suddenly back in it with parents and it is psychologically exhausting knowing maybe your own good years are being used in a new caring role?

Also do you start making compromises with your own maybe teenage children? Missing family meals, planning trips and work around this new caring role etc. Also we found our own friendships dropped because of time limitatio nd and our life has become a lot more insular as a result.

Yes. It’s also having an effect of my relationship with DH as he’s retired and wants to spend more time with me. I’m in the really busy phase where my teens need a lot of me before they fly the nest. They are really good and their maturity means that they understand the situation, but I’d much rather spend every moment with them than be sorting yet another crisis. DM is obsessed with her having cared for me as a baby and therefore I have to do my bit caring for her. Her dementia (along with previous difficult personality) means that she has very little insight into her care needs, and her selfishness is overwhelming. I’m trying to put in boundaries but it is so tough. The worst thing is I can see it getting worse and continuing for a good decade and me being completely broken by it if things don’t change. I’d love for her to be in a carehome and me to be a daughter again, but for various reasons, that isn’t going to happen. Trying to sort carers is another big task.

I'm caught.

DD is 21 But has additional MH needs, can't be left at home overnight and relies a lot in me to regulate.
Currently in crisis with DM serious in hospital (but improving).

Normal 2 nights visit per fortnight. I just had 5 nights, 2 nights home, and anticipating 6 night then 4 nights home.

DM may need to move to nursing home, but we also have DF.... Both in their 90s.

Not even there yet. I’ve still got children at primary school and two elderly relatives needing support - “D”M in early 80s, and another in the generatiom
above in mid-90s.

And neither the elderly relatives nor social services can get their heads around someone needing to be there for the children. As in literally there because they’re too young to be in the house alone.

I will add a similar paragraph but it won’t be limited to dementia. I do not want to live into my 90s not able to function, it’s my idea of hell, don’t know what dh will do.

As we said, ‘any other condition’, e.g. a major stroke, anything else that left us wholly dependent and unable to express our own wishes.

I didn’t know that you could add those wishes to health POA, that’s very reassuring as I wasn’t sure how people would even know they existed.

@EmotionalBlackmailthat must be so tough with young DC and yes I do sometimes wonder if the medical professionals actually believe what they are saying, but are forced to trowel on the guilt because there are no other ( cost effective) solutions. You can go to jail and have your DCs taken away for their neglect, there is not the same burden of care for any and all elderly relatives ergo you must prioritise your DCs.

Timing wise I guess I was luckier than most. DS was off to university and DH and I had just enjoyed a wonderful long haul adventure holiday and were saying we should do more before we got too old, before the wheels fell off the bus. Also very fortunate that DS adapted well to uni and is a pretty grounded and self sufficient individual with no additional needs.

I def feel resentful. Had to cancel my friend today as my mam needs stuff done. 80s. Its never ending. Nobody can do overnights as you going into jobs on feck all sleep. Its facing my husb parent too. I will never put this crap on my kids. Im already dreading today's visit.

I agree that you're brother has no business making promises on your behalf.

I think you need to show your brother information from the altizmers society and tell him exactly what going to happen to her. Tel him that she will not know whether it day or night so she can be awake all night or regular awake at 4-5 in the morning. Tel him as well it will be like trying to care for an adult sized toddler with no awareness of any danger or sense to know that something is bad or wrong to do. Then for some people with Alzheimer's it brings out the worse in there personality or makes them verbally aggressive and they can physically lash out over the smallest thing.

The reality is that you both need to look into carers for now and start looking are care homes that would be suitable when her care needs get to be more. If he wants to give up his job, apply for a careers payment from the DWP and move with her he can do this but tell him your not in a financial position to do the same. I would be very blunt with him now about what you are willing to do and what help your in a position to give going forward.
This is not been mean to your mother. You both need to be realistic about her care now and into the future and what you can both do to help her going forward. Promising her she can stay at home when he has no idea of what help she needs now not to mention that altizmers get worse over time and her care needs will be very high at that stage.

One of my friends mother's was diagnosed with Alzheimer's. My friend was living at home in there 30's when this happened. Within a short period of time my friend gave up there job and applied for a careers payment from the DWP. They gave up there job because their mother was not safe to be left on there own.
My friend described it as like trying to watch an adult sized toddler who lost all sense or any awareness of danger. Like put the cooker on and leaving it. Going out the front door, walking or 15 mins and not remembering where she lived. Getting calls from neighbours that she had known for 20 years plus to say they saw her a few mins walk away and she was in there home so my friend could collect her. My friend told the close neighbours that she had altizmers and asked them to ring her if they saw her mother out of the house on her own.
My friend could have been in the kitchen cooking dinner ect and her mother just went out the front door.
Then she was awake a lot at night or woke up at 4-5 in the morning and wanted to go to work. My friend eventually had to put her into a nursing home because of the high care needs. My friend was physically and mentally exhausted by then. Her mother died a few years later.

Just read the cockroach cafe here and you see what people are dealing with in regards to elderly parents or relatives.

Post about your mother in the elderly parents section and her needs going forward and you will get a lot of helpful information, suggestions and tips to help you out.

@Ilady I think your post may have been a response to mine, as I have the brother who wants to make promises of care on behalf of me (and a few others). I have made it very clear that I think we should do exactly as you describe- looking in to paid care options for now and the future and that I won't be taking on a carer role. I am only too aware of how dementia progresses and how utterly impossible it is to have any life of your own as a full time carer for a loved one with dementia. Unfortunately my brother refuses to listen to me, and doesn't appear to have read any of the information leaflets/links etc. I'm not sure whether it's an arrogant conviction that he knows better than everyone else or a form of denial/hope that it won't really happen to her. Probably a bit of both.

@EmotionalBlackmail you must be a similar age to me, early 40s?

I'm the first/youngest in my friend group to have an elderly parent. My parents were 40ish when I was born, which makes me between 10 and 20 years ahead of my peers.

My bff has just lost her last grandparent 😥