Dementia question - any experts around?

[pippop1]

Hello. I am genuinely interested in the answer to this question and don't really know how to find out the answer.

My MiL has dementia and when we are with her asks the same question again and again with sometimes less than 60 seconds between the questions. Why is it that, although of course I know she absolutely can't help it, it is hugely annoying and after ten times you feel your blood preassure rising to a point when you want to be rude back?

Surely my (fairly intact) brain ought to be able to process that it's definitely not her fault and that I should just trot out the same answer again whilst smilling sweetly? My DH finds it even more annoying that I do (because it's his DM I suppose).

Is there a kind of "caveman" reaction to those with such problems in that, in ancient history, anyone with this kind of problem was avoided?

Kids do this kind of questioning too (why, why, why) but I can cope with that somehow.

Are there any specialist Drs or nurses that might know the answer to this please?

Why?-because her brain cells are dying and she doesn't have the same thought process as we do.

As an experienced carer I think you are being very harsh and unsympathetic towards your mil, I mean how often do you see her, do you live with her?

Someone with dementia can behave like a child, so how can you cope with your kids yet you can't with your mil?

She will pick up on your frustrations too, and probably understand more than you think, it's just likely that she hasn't got the capability to get across what you want to say.

Doctors and nurses may not have enough experience with these people, you are better asking an experienced carer like myself.

Sorry to sound harsh but needed to get it across and if you want to know anymore just ask.

*what SHE wants to say

Some people are more tolerant than others. What sort of relationship did you have with her before the dementia?

No I'm not being harsh at all. I am always very nice to her (cook for her, do all shopping, take her to any appointments and go and visit frequently) and to her I am very patient, however what I feel inside is totally different. That's what I was asking, why do I feel like that when logically I know she can't help it.

She hasn't ever really been nice to me or even to her son (an only child) and I've known her for almost 30 years. She was v v critical of everything I did with my DC and my parents not in a kind way. For example, my parents asked her round to dinner when we went every week for maybe 10 years. They were never, ever invited back. I was criticised for my perceived lack of tidyness, schools choice for DCs and so on. Everything! (DH defended me but still.

I do it everything now out of pure duty and not with a good heart but I fortunately am a good actress. If DH and I didn't do anything for her she would not be in her own home. We are unable to go on holiday for more than one or two nights as she refuses to go into respite care. It is not safe to leave her for longer than that and there is no one else to help. she does have a daily carer but they cannot take responsibility for things e.g. problems with the house, a suspected broken hip and such like.

After the initial discussion we have never mentioned respite care again as she was so upset. Believe me I do a lot for her and her own sister (also in her very late 80s) thinks I am a really great DiL to her. Not all elderly people are nice and sweet you know.

The loss of brain cells results in the loss of memory, both long and short term.
You may find that she occasionally has very lucid moments, but not often.

I think that if you read your post above then you will understand why you feel the way you do. Imho it's quite understandable and especially difficult to then find yourself in the role of their carer. I suppose, as far as possible, you'll need to hide the way you're feeling from her.

It's not just you. It's a very, very difficult situation.

Have a look at Keeping Mum: Caring for Someone with Dementia.

Do the things that you do for her seem like too much sometimes?

My dad was like this and tbh it could get quite annoying. Much more so when I was trying to get him somewhere, for an doctors appointment for example, as he would ask over and over and still forget where we were going. Or if it was something important I needed him to try to remember. Not eating before blood tests etc.
He would insist on going back to the house 3 or 4 times to check that the door was locked, whenever we got in the car

But now he doesn't say anything except "i am dead" and " Help, Help, Help" constantly over and over again, all day every day, which is just horribly upsetting and really hard. I wish i'd made the most of the forgetfulness, at least i could have a sort of conversation with him then.

I'm not an expert, but my grandmother has dementia. When you're with a child you've never known them any other way. In fact you've known them less articulate and more babyish. But in an adult the change in personality caused by dementia is very disturbing. It seems to go against the natural order. The adult you've known as confident, articulate and sociable is gone, yet they still look the same. I think deep down I feel the wonderful, funny, loving person is still there inside my Grandmother (and sometimes I even get glimpses of her) and yes it's easy to want to tell them to just snap out of it. It's frustrating that someone who was so intelligent needs telling the same thing over and over. I'm sorry I have no advice. it's a cruel illness and very hard for anyone to deal with. Often all you can do is just be there. Perhaps read to her, play music or show photos rather than try to make conversation which can often be distressing to you and anxiety making for her.

I know not all old people are lovely and sweet pippop but in my experience most are. And yes people with dementia can be nasty and volatile, but if you try to understand and be a lttle more patient it can be very rewarding.

It's great what you have done to enable her to stay in her own home. Going in a home is (in my experiences) is something that the elderly deeply dread and although she doesn't and can't show her appreciation she would be extremely thankful for what you have done for her.

Try not to let the repeated questions get to you and try and pretend that it's the first time she's asked you every time. Could you even change the subject to distract her?

Does she have other sons or daughters or is your DH the only child?

There are a fair few youtube videos on using virgin coconut oil and medium chain triglycerides to reverse the effects of dementia. Not something I've experienced, but would be looking at in a similar situation.

Re the caveman response.......... I'm guessing dementia may not have been very common back then as we didn't live as long, so maybe there is no instinctual response?

Sounds like you're doing a great and very worthwhile job even tho it might not feel like it sometimes.

No my DH is her only child and we live just a few miles away and there are no other relatives that are interested in her although she was one of seven children and there are lots of cousins and a few of the 7 left (although they are all over 80). Unfortunately she was always a difficult lady to get along with and didn't invite people round or have any friends. I don't think there is anything wrong with doing your duty, I'd like to do it with joy but I can't. As long as she doesn't realise then I think that's as good as it gets.

You are of course right about the caveman thing. The life expectancy back then was very low so I'm sure most people didn't reach what we would consider nowadays to be even middle age.

In this booklet

www.tangledneuron.info/files/memory-book.pdf

there is a bit on Spaced Retrieval which is an excellent technique for dealing with repetitive questioning.

Good luck

Maybe you need to look into getting your mil some more help?
It sounds like you are doing a lot, and it does grind you down.

OP - you've answered a lot of your own questions wrt why the constant repetetive questions bother you so much.

Also you said that you can't go on holiday - what would happen if you do? Could she have extra care in her own home? Can she / will she go to a day centre a day or 2 a week? Can you try to arrange more care for her at home so you can do less for her? Or can you speak to social services or Age UK and find out what other voluntary services might be available to help you out.

Also what greensmurf said isn't necessarily true. A lot of older people with dementia are nice and sweet to carers / nurses / doctors, but when you see them with their family, it's often another story.

When I was a student nurse, I often thought how awful it was that families weren't helping these "lovely old people" but digging deeper, and with more experience in community nursing, I've seen that there is often a back story with very good reason why families don't want to be more involved. HCP's only see a small part of peoples lives, and we cannot judge family dynamics.

It is not a weakness for a family member to admit that they are struggling to cope with the stress of caring for another family member - make sure you are getting as much help as you can (including financial help for your MIL - if she gets attendants allowance, could that be used to pay someone to do some of the things that you do for her at the moment, to help give you some breathing space?).