Thread: What to do about mum!

Today we had our annual pre Xmas dinner at the local hotel today for all the siblings & their children to gather to see my Mum as they scatter to the winds on Xmas day.
This morning before the lunch, Mum rang me 3 times asking about whether the banks were open as she said she needed money for the lunch.......3 times in 30 minutes.....FFS. As I might have mentioned we are trying to keep the amount of cash Mum handles down to a minimum as anything over $100 in her purse and it disappears into her magic hiding spot that we are still to discover and she forgets where she put it.

I assured her that was not necessary as I have money belonging to her that I keep for emergencies or times like this. When we got to the pub my sister sorted out what Mum wanted from the menu so I gave my sister $50 and assured Mum that it was her money as she likes to pay her way. After returning to the table my sister asked who to give the change to...I said that Mum can have it (it was only $30) but Mum said to give it to me so that it would be safe. One minute she's fixated with having enough money and the next she wants me to have it so that she doesn't lose it. It's a mixed up, muddled up world in her head.

On our return to home I asked my son whether he picked up on the fact that Mum did not call anybody by their name, not even her own children. I think due to the number of people at the dinner which included her children, their partners, her grandchildren and their partners & great grand children, it was all too much for her mind to function with names. It was all "How are you darling?"..."Hi Love"...at no time did she utter anybody's name.

It all sounds very familiar and we have more or less stopped inviting mum to larger family gatherings. Mum gets in a bit of a panic and for weeks before gatherings worries about presents (if its Xmas or birthdays etc) and what she has to wear, and who's picking her up etc. Earlier this year we asked mum if she wanted to go to my nieces wedding (held locally) and she said yes, but it all got a bit too much because mum confused it with another niece's wedding being held interstate and mum thought she was going to have to get airplane tickets etc. Mum did go to the local wedding but after the ceremony she said she was tired and we took her back to her aged care facility. Just as well because the reception was pretty lively. Interestingly another family members mum who is 101 came to the wedding and stay until 11pm at the reception which is about when we left as well. Apart from some of the great grandies, Mum is still pretty good with family names.

Yes...I have found that small things that we think are minor seem to get blown up in their mind and she looks at them as big problems.

Just like to say to anyone whose loved one is at the stage like my mum is at present, of hiding possessions & money due to their dementia.......... THERE IS NO PLACE TOO STUPID or INCREDULOUS to look for them. It is unbelievable the places that an elderly mentally fragile person can up with to hide stuff. We found that out over the past week.

ACAT Assessment tomorrow for Mum....next step along the journey.

Hey All,

My mum has been a dementia nurse for 20 years, and I can see the toll its taken on her. I often visit her at work so I know the terrible it is for sufferers.

I got a research grant to develop a tool to help dementia sufferers, and their loved ones and carers. I am trying to identify the issues that cause the most problems. If anyone would like to talk to me, vent to your hearts content, maybe answer some questions I have, like as a loved one, what is the most frustrating thing, or what is the most frustrating thing from the sufferers point of view.

I would love to chat to anyone who has experience with this. You can send me a private message with your phone number and best time to call you. Or I can give you my number and you can call me when you need to vent. You can stay anonymous if you wish.

We need to do something about this disease, its such a painful thing for families to deal with!

Kind Regards,
Dimithri.

Originally Posted by dimithri

I got a research grant to develop a tool to help dementia sufferers, and their loved ones and carers. I am trying to identify the issues that cause the most problems. If anyone would like to talk to me, vent to your hearts content, maybe answer some questions I have, like as a loved one, what is the most frustrating thing, or what is the most frustrating thing from the sufferers point of view.

From a carers perspective the most frustrating thing is not being able to have even a half rational conversation. It's different compared to talking to a young child because you've never had a rational conversation with them whereas one might have experienced years of having rational conversations with the dementia sufferer. I realize this is a lost cause but I would like to know about more strategies to deal with this. I attended a two day Dementia Carers course and this topic was mentioned but it only got about 10 minutes worth of attention and that was mainly just talking about the problem and very little about solutions. There's never going to be a "one size fits all" or a "grand theory of dementia sufferer/carer conversation" but this doesn't mean it should be ignored.

What I reckon would be really useful would be a series of video clips showing interactions and conversations between carers and sufferers. These could be presented as a series of typical conversations showing the carer guiding the discussion in "not helpful" and then "better" pathways. This could be done for a variety of sufferers eg mild through to severe dementia.

Its hard to assess a sufferers perspective but I suspect the fear and confusion about what is going on is and any ways of alleviating this would be useful. For mum we did the usual recommended things eg setting up her room as close as possible to her previous living arrangement even hung her pictures up in the same place - we must a have done a good job because she often thinks she is still living in the same place.

BobL, we have not reached the totally irrational discussion stage yet as we can still have a conversation with Mum but the frustrating thing I found was when she does something odd like becoming paranoid about burglars...we can not have a rational talk about how there has NEVER been a break in her complex and thieves being opportunistic beings will not leave their car and walk into the Common Property and past 10 other Units to reach her place....believe me ...considering the places that we found her "lost" valuables on Xmas Day....the thief would give up as there was no way he would find anything.

On a separate matter...I tip my hat to the ACAT Assessor that visited Mum today. We only told Mum about it this morning for an 11:30am meeting and that was fine as mum couldn't remember when the Doctor told her about an assessment OR the other 10 times that we had mentioned it.

Our biggest worry was that Mum would be lucid enough to put on a show of normality but I think the assessors have been doing this too long. My sister & I were both there and we had a lot of laughs with Mum & the assessor during the session.

We were asked to correct Mum when ever our side of the story contradicted Mum's. It was like a Pantomime....after the assessor would ask Mum a question and Mum would say "No I don't do that"...Sister & I would chime in "Oh yes you DO !"

After about 30 mins of general questions it got interesting. The assessor gave my sister and I a sheet to mark our observations about Mum's memory and capability...this meant that while we were busy mum couldn't ask us about the answers to a cognitive test that the assessor was giving her with wide ranging questions. This is when Mum's lack of memory opened up to the assessor but she kept on reassuring mum that it was OK if she didn't know the answers.

Totally professional and well suited to that job.

Thanks for sharing BobL. That information is most valuable for my research.

Originally Posted by BobL

From a carers perspective the most frustrating thing is not being able to have even a half rational conversation. It's different compared to talking to a young child because you've never had a rational conversation with them whereas one might have experienced years of having rational conversations with the dementia sufferer. I realize this is a lost cause but I would like to know about more strategies to deal with this. I attended a two day Dementia Carers course and this topic was mentioned but it only got about 10 minutes worth of attention and that was mainly just talking about the problem and very little about solutions. There's never going to be a "one size fits all" or a "grand theory of dementia sufferer/carer conversation" but this doesn't mean it should be ignored.

What I reckon would be really useful would be a series of video clips showing interactions and conversations between carers and sufferers. These could be presented as a series of typical conversations showing the carer guiding the discussion in "not helpful" and then "better" pathways. This could be done for a variety of sufferers eg mild through to severe dementia.

Its hard to assess a sufferers perspective but I suspect the fear and confusion about what is going on is and any ways of alleviating this would be useful. For mum we did the usual recommended things eg setting up her room as close as possible to her previous living arrangement even hung her pictures up in the same place - we must a have done a good job because she often thinks she is still living in the same place.

Good idea BobL with setting up her room similar to home. My wife organised her Mum's old chair in which she always watched TV and that brought a sense of her old place into the room. Photos of the family from her old place also hung on the walls.

As far as videos & techniques for dealing with conversations to have with the person being cared for, it would be a help.

Personally I have to stop trying to work out where Mum is along her journey........After talking to the ACAT Assessor yesterday, I explained how I have read material about the "7 Stages of Dementia" and she said that the profession in Australia do not refer to stages (it's more an American thing) because every patient is different and some of the symptoms in some patients may be spread through the classifications of "Early, Mid-Stage or Late Stage" and it would be difficult to pigeon hole people to a Level and try to understand how to have a conversation with a person at a particular point in their dementia.

Dementia is indeed a terrible affliction
My mothers mental and physical health has deteriorated significantly over the past couple of years...and quite rapidly too
From barely recognising me 3 years ago to now seeing me as a complete stranger
I never thought or even considered that this would ever happen to my dearest Mum...truly heartbreaking stuff!
Hopefully into the future, newer treatments will improve health outcomes for those unfortunate enough to succumb to this dreadful disease...particularly early onset cases.
Interestingly my mother NEVER smoked or drank alcohol and lived a very healthy lifestyle
She did though suffer great anxiety in later years due to 'emotional' trauma...often wonder if this was a 'trigger' of her getting Dementia.
For those that do have a family member or friend with Dementia...cherish every moment you have with them.
Their quality of life can fade so fast...seemingly in a heartbeat
Our 'elders' are soooo precious...MM

Originally Posted by skot

BobL, we have not reached the totally irrational discussion stage yet as we can still have a conversation with Mum but the frustrating thing I found was when she does something odd like becoming paranoid about burglars...we can not have a rational talk about how there has NEVER been a break in her complex and thieves being opportunistic beings will not leave their car and walk into the Common Property and past 10 other Units to reach her place....believe me ...considering the places that we found her "lost" valuables on Xmas Day....the thief would give up as there was no way he would find anything.

Isn't paranoia just an irrational over-exaggerated fear of something?
For dementia patients I suspect it's probably because they have forgotten something so they then just pluck explanations out of their heads.
Many older people are already more fearful about all sorts of things even when they are rational, so to explain something they can't rationally they readily seem to find a handy fear and use that to tie up the loose end.

My mum's irrationality/paranoia is usually about things associated with her "stuff" and her "safety" I guess this is understandable when you forget where you are and where your stuff is.

With my FIL it was fear that someone would steal his retic, and his letterbox. The retic I can understand because many years ago a group of local yobs removed some sprinkler heads while he was watching from the upstairs balcony and I remember it really upset him. The letterbox is harder to explain because it is brick and concreted into place. I guess it could have been as trivial as a junk mail delivery or even postie that hung around his letter box for too long? For the last 12 months he was at home he often slept on the front balcony to guard his letterbox and retic.

With the video clips I reckon they could even make it into a comedy TV program a bit like like "Mother and Son" because it's important that not only carers and relations watch this but as many other people as possible. I'm sure a half decent TV scrip winter could craft a sensitive enough program that would cover a wide range of conversations - They'd just have to talk to some nursing home staff to get started.

To those who have already had an ACAT Assessment on your loved one, can anyone give me a rough idea of length of time from the assessment to receiving the report ?

Weeks ? Months ?