caring for my mother in law with semantic dementia, "don't know what to do!!"

[Kirsty30]

Hi all,

I am new on here and have found it useful to read a lot of posts.
Just be warned I am known to waffle, so please bare with!
My mother in law was diagnosed with semantic dementia about 2 years ago, it has been hard as docs and dvla have said she can't drive so straight away part of her independence was taken from her, which has been an on going struggle for her and for us (myself and her son) as we get the raw end of it, with shouting, swearing making hersalf fall and sometimes throwing things!.
I have read a lot on this type of dementia, I don't know about anyone else, but from what I have read to actually being with her is a massive difference. I'm getting more and more confused as I look more!
He main reason for this post is that I need advice............ Jan (mother in law) has started to get a lot more forgetful, aggesive, not listening if we are trying to help and basically doing as she wishes, even if that means its not in her best interests. That includes, last week. We had to take her to the hospital as she had blood coming out of her back passage. The drs tried to get blood for tests and she ended up ripping the canula out of her arm! I'm sure you can imagine what that scene was like
Anyway, where does this progress to now? How else can I help? I wanthelp her stop being so aangry at everything. Her social worker wants to do another assessment bit she won't agree to it. I feel like I'm loosing the woman I used to know!!
Has anyone else been in this kind of situation ?

Sorry again if I was waffling!


Kirsty

 

[canary]

Hello Kirsty and welcome to talking Point.
Im assuming that the semantic dementia that your MIL has is one of the types of frontotemperal dementia (FTD).
This rage is typical of FTD and you end up feeling like you are walking on eggshells. People with FTD like routine and a stable environment. They frequently get sensory overload too. Control, or rather - lack of it - is a big, big issue with people with FTD. Because of this they hate being told what to do, because it interrupts their stability and feeling of control. I work very hard to convince OH that things are his idea
As your MIL progresses she will understand less and less of conversations, which leads to mega frustration. Try and make your language simpler (though not patronising!) using short sentences and easy concepts. I know someone whose husband has semantic FTD who was trying to explain something. She said "on one hand xxxx, and on the other hand yyyyy" to which he replied in bewilderment "what have hands got to do with it?" My OH picks up words and strings them together in a way that is not what I said. It seems to me to be rather like talking in a language that you arent very fluent in. You pick up some of the words, but dont clearly understand what is being said.

 

[Kirsty30]

Hi, sorry for the late reply. Thank you for your post.
Yes it is frontal lobe. All the things you have said defiantly corresponds to what our situation is like. My MIL is swearing and shouting a lot more lately and you can see in her face that she can't explain what she means and can see the frustration. With what you said about 'on the other hand' in a conversation, I had to ask her, 'if you had a top pocket in your coat, would you be able to put your arm up to put something in it?' And her reply was 'I don't have a pocket there, mines down here' so I can understand that fully. Its getting increasingly hard to explain things, even making it simple is difficult. She needs to have another assessment done on her by her SW but she refuses as she can't have all the information they are going to ask prior to them coming.

Thanks again

 

[sharonbrown]

Frustration

Hi, sorry for the late reply. Thank you for your post.
Yes it is frontal lobe. All the things you have said defiantly corresponds to what our situation is like. My MIL is swearing and shouting a lot more lately and you can see in her face that she can't explain what she means and can see the frustration. With what you said about 'on the other hand' in a conversation, I had to ask her, 'if you had a top pocket in your coat, would you be able to put your arm up to put something in it?' And her reply was 'I don't have a pocket there, mines down here' so I can understand that fully. Its getting increasingly hard to explain things, even making it simple is difficult. She needs to have another assessment done on her by her SW but she refuses as she can't have all the information they are going to ask prior to them coming.

Thanks again

Hi Kirsty
How are things going? My mum hasn't had quite the aggressive nature of yours but she would get very cross about small things and in the last few years of dad's life made it quite miserable for him. He couldn't do anything right! As the disease progressed and more and more understanding of words was taken from her the frustration was terrible and mum became quite depressed because she had awareness of what she was losing. Perhaps your MIL's frustration is coming out in aggression instead so maybe it might decline as her awareness fades. Mum's disease progression has been very slow - diagnosed in 2011 - but now her language skills are extremely poor and she can understand very little of what is said to her and she can say even less to us. However we've noticed she is much more accepting of that so seems generally happier in herself. I can't lie, it's not going to be easy for you. It's definitely one day at a time. I have recently set up group on Facebook - Semantic Dementia - as a place just for those with experience of this particular disease. Talking Point is fantastic but because it's a relatively rare form of dementia most of the talk is naturally more related to Alzheimer's. We only have a couple of members at the moment but maybe we will be able to relate closely to your issues.

 

[Pinkys]

I would be very interested in your FB group. Is is public?

 

[sharonbrown]

I would be very interested in your FB group. Is is public?

If you search Semantic Dementia you will find the group with that title. It would be great to have a group of us who can share experiences of this rarer form of dementia.

Sharon

 

[Hellyg]

My husband has semantic dementia so I have just requested to join the group. How do you decide who to accept into the group?

Thank you H

 

[sharonbrown]

My husband has semantic dementia so I have just requested to join the group. How do you decide who to accept into the group?

Thank you H

The group is very new and I wasn't sure if anyone would find it, then I had the idea of mentioning it on here. Already two of you have joined today which is great. I know I've always wished I could find a place just for those dealing with semantic dementia. I will try and keep it as tight as I can.