Delusion and distress

[pipsmum]

Hi All, My Mum in law was diagnosed with Alzheimer's around 3 years ago and until now has been relatively stable. She's had her ups and downs, lots of tears and heartaches but also seen her mood improve to a point where she is confused but happy.

That's the short version.

Over the last few weeks we have seen a gradual but increasingly rapid decline in Mum with her spending a lot of her time crying and being really upset about young boys. She has two children (my hubby who is 39 and his brother who is 42) but she had mentioned a few times about young children then yesterday was trying to hug me whilst crying saying she had seen a young boy and didn't know if he was real or not but was hoping he was as she wants him so badly. she was so distraught and said something about children being left alone and feeing sad that nobody wants them.

She did go through a stage about a year back where she was convinced there were children living in the house and trying to shout at her in the garden but not as bad as recently.

She kept saying to me that 'Gemma has seen him she knows who he is'...but i'm Gemma and I don't know who she means as I don't have children and have never had family at the house when she has lived with us. It's so hard when she's telling me about 'Gemma' or 'that woman' and knowing she means me but I don't know how to reassure her!

She responds really well to her youngest son - my hubby but is still confused - its just that he is really good at keeping her calm.

She hasn't slept in a bed for 2-3 years and only sleeps for the odd hour here and there during the day. She's convinced people are after here and rarely feels safe, especially if she sees a strange face which means we're having to stay as routine as possible with her.

She is also struggling with the toilet and having problems with sitting on the toilet and with using toilet roll etc...Im presuming this related to depth perception etc.

She refuses to see the GP or consultant so it's hard to get her anywhere or have any assessments.

We've recently managed to get the GP to agree to increase her Donezapil from 5 to 10mg so we're hoping this helps in some way.

My full time job is as a learning disability nurse in mental health so I do have some experience but when it comes to those you love its so very different.

Not sure if I want advice or just to rant really!

 

[Amy in the US]

Hello, pipsmum, and welcome to Talking Point. I saw you hadn't yet had a response to your thread and while I don't have a great deal of advice for you, I wanted to bump it up and make sure you didn't feel ignored.

I'm sorry to hear about your MIL and all the distress she is experiencing. This must be very difficult for you and your husband and family.

I am sure you know this, but dementia does cause incontinence. Of course there can be other problems, but eventually all dementia patients become doubly incontinent. I'm not sure of the exact mechanism but believe that their brain no longer can interpret the "I need to go" signals.

And the problems with being upset about children, babies, youngsters is, at least anecdotally, also common with dementia. I have definitely seen others on here post quite a bit about that.

I am in the States, so our system works a bit differently to yours, but am guessing that you probably need an assessment and some help from your GP and possibly other organizations, to sort out some help for your mum-in-law. I do understand her being resistant to going to the doctor (been there!). Some advice I've seen here on TP specifically about that includes:
-if you have permission to speak to her doctor, make sure you do that
-if you don't have permission, you can still tell them anything you want, they just may not respond to you. Schedule an appointment, send a letter or fax, drop off a list, whatever works, but communicate your concerns to the GP. Be as specific as possible so they get a real picture of what is going on
-have the GP contact her and insist she come in for a annual checkup, a well visit, whatever they want to call it. Some of our loved ones will be compliant when the doctor initiates an appointment
-use love lies and take her to see the GP for an influenza jab or any other excuse you can think of
-arrange for the GP to visit her at home

I think then you can get on the path for help with continence and other things, but others here will know more about how the system works.

It's great you have professional background experience with this but you're right, it's not the same when it comes to our own families. This is just so difficult.