And breathe

[AlphaBravoHenryFoxtons]

MIL is still in her house. She had a carer for a little while but she let the carer go a few weeks ago. We have no idea why. She is now pretty much incontinent and not very mobile at all. She can't walk without assistance. She lives an hour round trip away from us and we bring her here to spend the day with us once a fortnight and DH goes to see her one day in the week and takes her out for lunch on the alternate week. She's 85. Each time she comes she has an litle (or sometimes big) accident. And she regularly wets herself on the way home in the car, so it's clearly a regular occurrence. (She uses pads but I don't know if she forgets to change them as they aren't doing the job). And the pooh explosions are beyond belief. Does she need to be seen about this or is this pretty much par for the course? (sorry to be indelicate)

She smells awful. Her clothes are stained and smelly. I have offered to do all of her laundry on an ongoing basis but she says she has a washing machine. I keep raising it with DH but he's burying his head in the sand. She definitely isn't coping well at all. Family friends have told us her house smells of urine and that she needs more help. DH keeps saying he thinks she's fine but I think deep down he knows that she isn't really.

She is now losing her short-term memory. So that may be in play re the incontinence. More often than not she doesn't wear her hearing aid so she talks at us but can't hear our answers.

Does anyone have any advice? I feel exhausted. Money isn't an issue, she can afford help. And we are very willing to help practically and financially in the event she needs more care than she can afford.

And she is now asking about looking at 'a home'. But says: 'Not for now but for when the time comes.' What do we do about that?

You should probably look at homes for her tbh, she sounds like she needs a lot of help with personal care as well as help around the hous and incontince care. If she spends a lot of time alone without stimulation then her memory problems will get worse more than likely.
Sometimes people find it very hard to admit to themselves that their parents are not who they once were and need support. Maybe you could start looking at homes in the area and see which ones you think would suit her making a short list of homes to visit. Also does she have a social worker?

I would definitely agree she either needs to be living with younger persons who can care for her, or in a home. I guess the former is unlikely so the realistic option is for her to live in a home.
Burying head in sand is very common amongst the children of those elderly persons who can no longer live independently. I know, I've been there. So DH can either be open to argument and persuasion now, or a crisis will need to occur before your MIL moves to a place of safety.
The poo explosions are definitely not normal, whether elderly r not. There are lots of possible causes from the relatively benign and treatable, to bowel cancer. It should be addressed,, probably starting by her GP. Good luck, you are trying your best in difficult circumstances. If it all gets too much. I suggest taking a step back to preserve your own energy and well being.

Thanks for your thoughts.

A family friend apparently took MIL to see a home. DH's brother is furious and thinks the friend was 'interfering'. I explained I felt she had MIL's best interests at heart and that she clearly needed more help than she is currently getting.

I think DH and his brother plan to meet sometime very soon they have a very odd relationship whereby they only really communicate on a needs must basis, they never phone one another for a chat to discuss some sort of plan.

Hopefully they'll come up with some sort of plan for an assessment of need.

Thank you so much for supporting me through it.

Sounds like you all need more support. Does she have an official diagnosis? Has she been assessed under the MATS protocol?! Sounds like she could really benefit from some input from your older people's community mental health team; she would be entitled to a socially funded assessment bed for up to a month to have her needs worked out and planned for

Chestnut100 Interestingly enough for the past couple of weeks she's been remarkably on the ball. Which is confusing. Thanks for those suggestions I'll pass them on to DH as she doesn't have an official diagnosis and maybe that would be a good start.

Yes! An official diagnosis is the key that will unlock the door to lots of potential help

Hi Alpha, this sounds like a really difficult position for you to be in. Do you think DH is doing enough or do you feel like you're making up for his inability to cope with the situation?

It sounds to me like he is blocking it out and needs to be made more aware of what is really happening. It also sounds like your mil really needs the support and you need a break.

Having been through a similar situation myself, I know how hard and how huge the step to a home is. It's not a decision that can be taken lightly and for a dementia sufferer who doesn't want to leave their own home it can be devastating. For the children of the sufferer, the guilt makes you feel like you are condemning your parent to the end, sorry to be morbid, but when you're first making the choice it's hard not to feel like you have failed in your duty as a child to help them.

We have had huge success with live in carers through an agency. The cost is much cheaper than a home, and allows people to stay in their own house whilst getting the support they need whilst giving the family reassurance that someone is there to help. You don't have to sign long contracts and the care can be set up very quickly, so this really is something you could try as an interim step between now and the terribly hard decision to choose a home.

Please pm me if you want to talk anymore, I can't tell you about the continence but the carers most definitely will be able to tell you what is normal after a few days together.

Sorry you're all going through this.

By the way, please be prepared that in my experience, old she psychiatric services are very poor, we had to wait two years for a diagnosis for my mother. Just don't take no for an answer.

Whitechocolatestars DH seems almost depressed, perhaps due to the strain of seeing his mum like that. The worry of it is actually taking its toll on us all.

My sister has warned us that we need to choose a home carefully and wait for a vacancy, whereas if you only accept that's needed in a time of real crisis then you get no choice of where you go. It does seem more sensible for her to be making decisions for herself while she's sentient. To look now while she is fully engaged with the decision making.

Yes your sister is right, we had to do this for my DF. Some homes have a waiting list of many months. The best thing you can do is go and visit some and sadly, I have to warn you that even the best ones will bring you to tears at the thought of sending a loved one in. Seeing the homes is a real reality check. Your family will need time to accept these circumstances as well, it isn't likely to be something you're comfortable with straight away. the best way to come to terms with it is to know you have fully investigated all the options and made the very best choice, it's the only way you can live with the decision (in my experience).

My point above is, it doesn't have to be black and white, care home or living independently. You can get care in the home almost straight away which can both potentially extend the time someone is able to spend in their house if it goes well or else offer reassurance to you all that your MIL is being well looked after whilst you take all the time you need to make the right long term decision (and potentially wait for a place).

You should consider finances early, although I know you said money Is no problem, the costs are eye watering. Depending on where you live, care homes can be £1,000 a week (and upwards for the flashy ones), live in care can be around £2-3,000 per month depending on needs. There is little or no state help if they have assets over the threshold (£23,000) and liquid assets are not always available.

One thing your MIL will almost certainly qualify for is Attendance Allowance, it's a non-means tested benefit which can make a real difference.

Lastly, your DH is probably doing what I did and going through a period of loss and grief. Although he has not lost his mother, he has lost the mother he has always known. It's not unusual when families have dementia, it's an incredibly sad and cruel illness. Your support will be crucial to him. Sadly this is the beginning of a long hard road that ultimately only has one end, it's horrible and I'm so sorry you're experiencing it.

Sorry for the long post, it's just that I have been where you all are and hope there might be something I can say that will help.

whitechocolatestars - thank you very much for your thoughtful post. We do realise she won't qualify for any assistance. Fortunately she has a decent pension and we are more than willing to make that up if necessary.

I'm trying to be supportive to DH. But I feel quite resentful of his and his brother's refusal to face it. It's causing quite a lot of wider stress which they seem happy to overlook. Sorry to be woe is me. But I feel very stressed by it and the only way I can actually cope now is by detaching from it as much as possible. When she comes for lunch I wish I could go out. I just can't cope with the talking round in circles for several hours every other Sunday. I know that's wrong and I know I would feel differently about my own mother. But there it is.

She keeps asking me how many brothers and sisters I have. And then five minutes after I've told her, she asks me again. I find it really upsetting. especially when she asks me about where my mother and father live now (my father is dead). It's just not what I wanted from family life. It has got to the point where I think I may just have to start going out for the day and take DD with me. Then come back to clean the loo, the hall floor, the cushions, the car seat when she's gone home.

There just seem to be so many competing needs anyway with 4 children.

Sorry if this is self-centred.

It's not self-centred, it affects everyone and often those supporting the family can feel just as much pressure but feel that their stress is somehow less valid because it's not their actual parent. Whatever you are feeling is ok, it sounds like you are being absolutely wonderful and DH and mil are very lucky to have you.

There is nothing wrong with a bit of time out, absolutely nothing. If you need a break from it then do plan something with your dd one day.

You need to talk to your DH though, communication is so important when it comes to dealing with this situation. Tell him that you feel things have gone past the point where you can simply keep pretending everything is ok, and that you yourself are feeling the burden. It has to be addressed for your mil's sake more than anything. I can absolutely assure you that she will be well aware of what is happening to her, people in early stages of dementia usually are, but it's so hard for everyone to address. It may come as a relief to sit and talk through everything frankly together, it would be a huge step forwards in itself.

As for how you imagined family life, again I understand. In many ways this is very much why you (actually your DH and his DB) have to reach out for as much help as possible, you shouldn't be dealing with it by yourselves. However, I'm sure you of all people know that sometimes life is just cruel, I'm so sorry to hear about the loss of your father, and can imagine this brings back many feelings that you hoped you had put behind you when you went through that loss. When you need to get away, do. Don't feel guilty.

You need a plan to move forwards and communication has to be the first step.

The GP is the next, with a referral to the right team to assess your mil and determine the right help to you all as a family that might be available. Please stress any risk that you may believe she is to herself or others, either consciously or not (eg not being able to recognise dangers in the home) as this information is critically important in helping a very very over stretched service area prioritise their caseload.

Then, you need to explore every option and allow time to make the best decision.

Posting here is in itself a step forward, you have realised it's too much for you to support the whole family when no one else seems to be taking control of this horribly sad set of circumstances. You are all important, but there are sadly more cruel times ahead and how you deal with it now will directly impact how you all get through the future together.