Has moving Mil in made her dementia worse?

[Ann Mac]

We moved Mil in because over the space of just under two weeks, we discovered she was doing things that we felt put her at risk - mainly wandering the streets in the early hours, convinced she was in Ireland, looking for her late husband. She was also repeatedly phoning the police to report him missing, and waking her elderly neighbor, sometimes 2 and 3 times a night, to ask where he was. At the same time, she wasn't washing or dressing, she was eating food that had passed its date (though wouldn't let us or the carers check her fridge to try and prevent this), was increasingly mixed up with her meds, she regularly failed to recognize us, and she seemed to be hallucinating quite badly - other stuff as well, but that's the gist of it.

The first couple of weeks she was here convinced us we were right to move her in - aside from the fact that she was often completely confused about what year it was - and would get upset looking for my hubby, believing him to be a child still - or about where she was, a lot of the time she thought she was in Ireland (where she was born) and because of that she was completely unable to go out independently. Her ability to do things around the house safely was also really poor. At the memory clinic, the test results had dropped to 15, from 27, and they confirmed that she really isn't able to live independently anymore.

But, there is no doubt that she is deteriorating more and more with each passing day, and at a rate that is terrifying The times when she is quite calm, and has some insight, are fewer by the day. The paranoia is virtually constant, the hallucinations are getting worse and she spends most of the day (and often a lot of the night) looking for ways to confront and argue - even when we can meet whatever demand she is making at the time, she will then change the goal posts and ask for something outrageous, or even change completely what she wants. Accusations - all of which are completely unfounded - started by being aimed just at myself and hubby, but now even the kids are becoming fair game. She talks and laughs to herself almost constantly, sometimes clearly back in her childhood, but sometimes its like she is planning out scenario's she could try on us - and I have to admit, that is almost scary, because some of the stuff she comes out with is so devious and nasty.

After another really, really bad day yesterday, where she spent the whole day from 8a.m targeting me with nasty comments and trying to get the kids to agree with her, and doing just about everything she could to disrupt and grab attention ( at one point she even said to me that unless I let her have what she wanted - in that instance, the phone so she could call the police - she would 'kick off' ) , once we finally got her reasonably calm and in bed, Hubby and I were wrung out and exhausted and we ended up wondering if the state she is in now, the ongoing and rapid deterioration, is down to us moving her in here. Though we don't know what else we could have done, we are really worried that we have made things worse for her and haven't a clue how to help her through this . We ended up talking for hours, both guilt ridden, trying to work out what else we could have done or could do - is she going to continue this rapid decline because she is here? Do we need to give her more time to settle - or is she never going to settle?

We are trying taking her home for the day, today - hubby will stay with her - to see if being in her old surroundings will help her settle here tonight. Not sure if it will make things worse or better, but have to try something

 

[rosiee]

I assume you've taken her into your home? Very well done I couldn't of done it, particularly with the behaviour, you've definitely nothing to feel guilty about. From what you're saying she definitely couldn't of stayed where she was.

I know people are going to say its the illness not her that's causing her behaviour but that doesn't make it feel any better when you're on the receiving end.

As for settling down no ones going to be able to tell you that, it could take months it could never happen. When my Dad moved to a care home he settled straight away, when it was Mum's turn it took about 6 months, but both would still rather of been in their own home.

To be perfectly honest I think you should be thinking of a care home where you can enjoy visiting and leave if things get difficult. Its not just Mil to consider there's the rest of the family to consider too.

 

[kingmidas1962]

I'm sure someone will be along with experience of this - I have none, but I know that any change is very difficult for dementia sufferers to handle.

You're caught between the devil and the deep blue sea here - MIL is clearly not safe on her own and may not ever be able to settle with you or back at home. I don't think your family should be having to accommodate the hallucinations and aggressive behaviour, particularly your children (IMO)

I know it's a subject many people find very hard to start thinking about but had you considered some respite care? It might give you some breathing space and she will be safe.

Does she have any carers in by the way?

 

[FifiMo]

I don't think the move will have made things worse, per se. You are now seeing first hand what her world was like when living alone with the bonus now that the risks she was taking eg wandering have now been reduced. The main issue that you cannot resolve is that her reality is not the same as yours. She is a young woman again, in Ireland and everyone around her is seen in that context. Your husband is looked at in the context of being a child because he does not figure as any of the adults she knows in HER world. Unfortunately you cannot reinvent her past for her. You could take her to her own home in Ireland and it still wouldn't make a difference as the people are no longer there to complete the picture. Another thing to be aware of is that you can enter her reality to a certain extent but she is less able to enter yours. Don't argue with her. If she is very distressed about Ireland then you could try taking a drive in the country, and coming back to your home. You can tell her she is on holiday or she has come to stay so she can help you out. Looking at photographs sometimes helps and helping her to reminisce about her past. Food is another way to evoke memories and so is music. You might even get to hear some stories about your family that you hadn't heard before.

Taking her home to her previous home might have little impact as it has little do to with what her current reality is. Once you move someone, the short term memory quickly forgets the previous place, despite having lived there for a few decades. For us, I think the real insight is that it is the people that really enrich your life. Not just family but neighbours, local shopkeepers, the postie... This is what 'home' really is. Not the bricks and mortar but those who occupy it.

Fiona

 

[Love&Light]

Morning Ann Mac,

Just a thought, if the deterioration has been very rapid it might be worth while to get a health check especially a urine test in case there is a urine infection or some other physical cause increasing her behaviours. Urine infections can create major difficulties as can dehydration if she is not drinking enough fluids. Once this is eliminated you can have a clearer picture.

With regards to moving I had a similair dilemma but then realised that when my partner wants to go 'home' it is actually back to the house he grew up in (not the one we moved from on our retirement) which made me feel less guilty. It may be your mum is wanting to go 'home' to Ireland.

We all need help at times when caring for a person with dementia and sadly at some point for many that means having to make very hard decisions.

I am sure that as a family you are doing the very best that you can and as a family will consider all options and needs of 'all' concerned. Then continue to extend what support you can, making decisions together eg: respite, care home as required.

I send you all love & light and remember you can only do your best (which you are DOING).

x

 

[Ann Mac]

It was impossible to get back on here yesterday, so apologies for taking so long to say Thank you for the replies x

Rosiee - the memory clinic staff, and GP's have both said that it may be that a care home is the only option - but they understand that we have to try first. Quite how long we can 'try' for, I don't know - as kingmidas said, the children (although son is 18) have to be the biggest consideration for us. Because she has only just moved in - well, nearly 2 months ago, now - a care package isn't in place yet, though respite, day care in particular, is being sorted as quickly as it can be, we are told.

Fiona, when she is in full flow, the paranoia is dreadful - we have tried saying she is here to help me, and so on, but she just keeps going back to being kept a prisoner. She has no photographs of her early life - and only a few going back to hubby being a child - but we have tried the music, and sometimes that will calm her at least a little bit.

Love&Light - yes, we wondered about a UTI - we had her checked out 2 weeks ago, and since Friday have been trying to persuade her to give a urine sample, just to check again - but she hasn't wanted to cooperate.

Yesterday she had an annual medication review and check up - this would be her last appointment at her old GP's - and the nurse she saw was so concerned about the way Mil was, that she asked us if we would see one of the GP's - obviously, we said Yes - and the GP (who has known her for years) prescribed rispiridone. He was pretty brutally honest - in just 5 minutes, he said as far as he could see it was a case of try this - or we would both end up ill. He was straight about the side effects, and again, we were satisfied that its going to be very carefully monitored - doesn't stop the worry and guilt, though, as neither hubby or I are that comfortable with the fact that the route to medication like this seems to have been so rapid - but we don't know what other option could be taken

Like the lorazepan given to her last week, it seemed to have an impact straight away - she remained calm, if confused , last night, though she didn't seem 'dopey' or spaced out. We have no idea if she'll be the same today, or if - as with the lorazepan - after a day or two, it will have no effect at all. Feels like we haven't got our head around all the info about medication yet, so we just don't know what to expect

 

[Canadian Joanne]

Hello Ann,
I very much doubt that it is the move causing the deterioration. What you are seeing is how painfully clear it is being made that your MIL is no longer capable of learning new things. A move simply adds to the confusion.

Regarding the risperidone, my mother has been on anti-psychotics for many years now, due to her behaviour. The only thing I would say is to start slowly and keep a close eye on things. I think there is a place for anti-psychotics but they do need to be monitored. My mother was on risperidone for 2 or 3 years, until she developed Parkinsonian Syndrome, which is not uncommon. She developed a tremor and became rather rigid. These symptoms went away when she was taken off the drug. Now, this doesn't mean it will happen to your MIL, it just means you need to monitor her carefully.

 

[Ann Mac]

Thank you Joanne

Mil is on 0.5mg of risperidone, twice daily, so presumably the lowest dose possible? We have been told that can be increased if necessary - but obviously, we are hoping it won't have to be.

Mil remained very calm yesterday, usual forgetfulness and repetition, but absolutely no sign of any aggression, hallucinations, anger or paranoia. She was, however, very tired and confessed to feeling drunk - spoke to our contact at the memory clinic, who said that can happen, and to monitor, but also added that after several weeks of Mil rarely sleeping for more than 5 hours a night, and after all the weeks of extreme agitation, Mil was probably exhausted. She is to see our GP either today or tomorrow - hoping she will cooperate with the urine sample today - and a CPN has been allocated, and is coming to visit on Tuesday next week, and she will apparently be monitoring Mil closely as regards the medication.

The lady at the clinic also said that though the move might have sped things up, she felt it was probably not by much, as Mil was showing signs of all this behavior, and it was already starting to escalate before she moved here - her opinion was that the main thing the move has done is made sure that Mil was already in a safe environment when things 'got worse' - made me feel a bit better, at least.

 

[singp]

Hello Ann
I think that most of us are uncomfortable with the thought of a loved one being prescibed this type of medication to control their behaviour. However the stress and agitation your MIL was experiencing must have been extremely unpleasant for her as well as exhausting. If the medication can give her more peace and calm then that is good for her, is it not? And as has been said, she has experienced this dreadful period of her illness in the safety of your home where you and your hubby have kept her safe, prevented escalation and quickly got for her the professional support and medical help she needs right now. You have done so well for her.
Pauline