New carer ...

[CharlieandLolaCat]

My 74 yr old DM has Alzheimer's and while only 3-4 yrs post diagnosis she has had it for at least 8. I went on a short holiday with her and my DF a couple of weeks ago with my 4yr old DS and realised just how bad it was. Everything I did for my DS I also had to do for her (my DF is a bit male about it all and I think depressed).

Anyway, after that, DF and I had a v difficult conversation and I spent a week trying to find a carer, only one agency will go to their 'difficult to access' village and they start tomorrow (and just to be clear, I think they are great).

My DM is ill, I understand that. But she is also v difficult. She doesn't wash, brush her teeth, know where the loo is so can't go, when you take her she doesn't know what to do with the loo paper, can't make her clothes work, she is becoming incontinent over night, won't use a pad, can't prepare her own food, won't eat what you give her regardless of whether it was her choice in the first place, hates most food (would happily live on bacon), is becoming more and more insular and can only cope with family but really that means DF and my two DSis and we all work FT), is on a 5 minute loop, gets distressed if my DF isn't there, hates him if he is .... you get the picture, she clearly needs more support than my DF is able to give but equally when he got (an entirely inappropriate) carer (no dementia experience wouldn't provide personal care) in a couple of months ago, she sacked her in the first week.

So, my DSis and I (there are three of us) are doing all we can to support them with the new carer starting tomorrow including working from home as much as possible to help settling in, but I am fully anticipating it is going to be horrific (lots of tears and tantrums and to be fair that may just be me). Does anyone have any advice? Anyone else got a care refuser? Someone that can't see what is best for them and that their other half isn't coping? She doesn't have capacity, we are trying to help and if the situation was reversed she would have someone in like a shot to look after DF but she just can't see it.

There must be a way to help her to accept this .....

Oh god, sorry, that was long and not her clearest post. If you made it this far, thank you.

Oh, and she can't be left alone (will wander/starve etc) DF is still chairman of the governors at the local school, has POA and needs to get out for his own sanity.

I hope you've asked the company for a carer with experience and/or dementia training.

I was a carer for 22 years, the majority of my charges having dementia. Some of those people were (like your mum) challenging, but I had a calm and quiet enough nature (and vast experience)to be able to help without anyone getting stressed.

The carer will need to form a bond with your mum and gain her trust before she can begin to provide personal care like showering etc.

Is your mum on any medication to calm her a little?

You are not alone, this is not uncommon. With luck the carers will have good experience of clients with this level of dementia and will have seen it all before. What are you expecting the carers to do? Do you know how many different carers they are likely to have to send in a week? Did you get social services to do an assessment or did the agency do it? It may take time for her to accept all the help you hope her to have.

Do not let her 'fire' the carers. Do not let your dad fire the carers. Stand firm.

Have you spoken to a Doctor and/or completed a Respect form? www.respectprocess.org.uk

I'm sure you're in touch with www.alzheimers.org.uk, they may have a local dementia navigator who can help you.

And I hate to have to say this, apologies if you find it upsetting, but start looking for good homes for respite care and possibly for her to go to when things progress even further. Dementia is a leading cause of death now, it is likely your mother will die of dementia rather than anything like heart disease or an infection, and late stage dementia needs nursing care.

That sounds awful CharlieandLolaCat

My mum had dementia. I decided to give my job up and look after her. My 5 siblings all had to work, luckily I could afford to do this.

I won't lie to you I didn't know what was letting myself in for. I can't imagine a carer would have done it. In the end after 3years by that time all the siblings had fought and argued with each other as to what was best for her. She went into a home it broke my heart, but she really did need 24hr care by then.

Does she have a social worker?
Could you find out about day centre's in your area.

Any decent care company will be well prepared for a patient with dementia. Often it's short visits, just to say hello and have a cup of tea and trust takes a time to build before starting personal care.

I worked with a lot of dementia patients when I worked in care, and personal hygiene may be an issue for the family but it's not one to your MIL. Try and remember she's a different person now to who she used to be, and some things are better not worried about. People get past the point of being taken to the dentist/doctor etc and as long as you're changing beds regularly and clean clothers are put out, that's kind of the best you can do. Try covering chairs with waterproof covers underneath and beds; that makes washing a lot easier and stops the furniture from getting too smelly.

Also talk to her GP about some anti anxiety medication, and that she's getting everything she may need.

Thanks all.

We are self funded and are v fortunate to have the available money but it means that we haven't involved social services but she is under the care of her GP and the local dementia clinic (or whatever the correct terminology is).

The carer (and we have been assured it will predominantly be one carer) has the right experience in dementia care and they come recommended by the doctor's surgery.

I have been in touch with AS and spoken to their helpline, didn't discuss dementia navigators, will have a look on their website and check out what this is, thank you.

She is on drugs (couldn't tell you what) for the Alzheimer's but I have been wondering if she should be on something for the anxiety but equally I don't want to sedate her. Sorry that probably sounds wrong, but I think we're managing her badly and if we get that better the anxiety may abate and don't want to over medicate. Maybe my natural aversion to medication is actually detrimental to her. Will discuss with DF and he can talk to the the GP next time they go.

I agree we need to look for respite. My DF needs a break and he is having to have an op on his foot that he has been putting off out of concern for my DM but if he doesn't have it soon it will have far reaching consequences for his ongoing mobility so we will at least be looking at live in care then. He also would like a couple of days to see his best friend who lives a way away and realistically that means mum in respite. But I can also see this being the tipping point for her becoming even more introverted.

With the carer, I absolutely agree they need to build a rapport to be able to do the personal care but I just can't see this happening. My DM has repeatedly said she will have nothing to do with her (the whole conversation upsets her immeasurably and the she forgets so it is like you're having it for the first time). Is there anything that you can suggest @Lynne1Cat that may help her to develop that rapport? Any tricks that you used to do? Things the family did that helped? Didn't help? Any suggestions welcome.

I used to sit and talk with my "patients", quietly and calmly, even if they didn't understand what I was saying. I used to hold their hand, read to them, put on some quiet classical music (I can't stand classical but apparently it's meant to be relaxing to people with dementia).
Looking at old photos, talking about the person's childhood, pets, anything from the past, used to work.

I'd have some patients hit, punch, bite me! It used to take a little while to gain their trust, but with regular visits, that was possible.

It's important to never contradict a person with dementia - for instance, if they say they're going to work/see their mum, something like that, just agree and divert their attention to something else.

Some of the ladies I used to go to would like me to brush their hair, paint their nails, once we'd established a good relationship.

@lynne1cat you sound lovely, I wish there were more like you around . Good luck op x

Have a read of the book 'Contented Dementia' by Oliver James.

It's his own story of his family coming to terms and managing his MILs dementia.

Essentially though if your DM has gone past the point of understanding then you need to stop trying to get her to understand/agree which will make all of your lives much easier.

There is no point upsetting her over and over again with discussions about the carer, just arrange for the carer to come. I often speak to families in this predicament and always reassure them that actually it is ok sometimes to not tell the whole truth to someone who has lost capacity and their long term memory if it will only upset them. Kindness is nearly always more important than the truth.

Another example of this could be that when your DF has his op and she has respite she may be asking 'when she can leave/where is he' and it's okay to say 'you are going after lunch' or 'he will be here in a minute' if the likelihood is she will have forgotten immediately anyway. Much kinder then having to deal with her being upset by the truth over and over again.

@Lynne1Cat you do sound lovely. Shall keep my fingers crossed and will do what I can, hopefully it will work.

@hatgirl I know you're not supposed to contradict but it's so hard! I am rubbish at it and if I am tired I can be impatient which really isn't fair. My sisters and I would love not to explain everything to her but DF thinks she should agree to everything and tries to do it all by committee which as I am sure you can appreciate doesn't always have the best outcomes. I think I probably need to do as much if not more work on him on reflection.

Thank you all. As much as anything it was good to say it all out loud. I am (we all are) riddled by guilt and then she is either telling us we all ignore her/don't care/it is all about us and not about her or she is clinging to us like she is drowning. It is exhausting. It is good to hear from people who have been there and understand.

And @CocoaGin70 I do hear what you're saying about hygiene but honestly, there are times when she smells so bad I have to steel myself to physically go near her ... it's so hard to know what to do for the best.

Does your DF have any support for himself? My MIL goes to a weekly support group for those caring for a partner with dementia and it's really helping her.

You mention needing to work on your DF's approach to this, and perhaps having outside support would help you with that.

I could have written your first post Charlie

The Oliver James book is good but basically I follow “The R’s”. (CnP from elsewhere)

Remain calm: Don’t argue or try to reason. Take a deep breath before you act.
Respond to feelings: Validate how your loved one seems to be feeling at the time.
Reassure: Remind your loved one that s/he is safe and cared for.
Remove: Remove yourself physically or distance yourself psychologically for a moment to regain your composure.
Return: Return fully to the situation when your loved one begins to calm down.

We are struggling as a family (well I say “we” but in reality my Dad and I are and my siblings are not)

So thank you for all of your input, I just thought I'd update. New carer arrived yesterday and it was v much a getting to know you session. Was all going fine until DF started to tell her what he thought mum needed as if mum wasn't there ....

However, my DSis and I managed DF and told him what he needed to do today and it seems that DM let her help her shower and get ready and when my DSis dropped in they were going through their wedding album and the carer was encouraging DM to drink water.

Anyway, I am sure there will be peaks and troughs but at least we started well.