Early stages of Dementia

[Gordon Gekko]

Hi All,

My 70yo Dad has just been diagnosed with early stages of Dementia. His next step is to have a MIR scan to check which part of his brain is effected.

In the last 10 years, he has had a hearing problem, so a lot of things werem put down to that. These days he takes his dog for a walk thru the bush and sees a koala. He comes back from his walk and says he saw one of those "furry" animals up a tree again, he can't remember what they are called.

Has anybody been thru this or going thru this with a friend or family member? Any advice?

We (family) knew something was wrong, Docs have just comfirmed it. It's a very sad day.

I'm also worried about myself, for some reason, I can see myself going down this track too. I know the answer is to keep the brain active, read alot. Any other advice.

Cheers

GG

 

[Ocean Architect]

There are entire forums/support sites dedicated to this. I would suggest looking there.

Also don't worry about getting dementia yourself. If you get it, you wont care anyway If anything read up on brain saving supplements and chemicals, which from memory are things like oregano and certain fats (omega 3 etc)

 

[pennyk]

My mum passed away earlier this year after a loooong battle with dementia. I certainly found it the most difficult thing I have ever had to experience. It was heartbreaking, frustrating, devastating....... you get the picture.
sorry I cant give you better news!. I guess there are different kinds of dementia, and they progress at different rates. So, you wont necessarily have the same experiences. But, prepare yourself for emotional pain. Its very hard to watch the life being sucked out of loved ones, and watch their minds slip away.
Make sure he is prepared now, financially and with power of attorney in place, discuss nursing homes. I guess if he is open to discuss all those sorts of things, it will make it much easier. We had to move my mum into a nursing home against her will, because she was unsafe in the community. Its heartbreaking. I would suggest moving into some sort of low care supported accommodation earlier, rather than waiting for a crisis. That gives time for them to get used to it when they still have the ability.
Get to know your local aged care team..... get them involved early.
If you have picked it up early, there are medications that can be used, I believe. My mum refused to ever see a doctor, so we didnt have those options.
Make sure you have strong emotional supports around for you and your siblings.
In terms of genetics, and being worried about getting it.... I think all of my brothers and I also have the same fears. they say doing crosswords and puzzles, and general activity and health can help prevent it. In alternative health settings, they feel aluminium has a big role to play (so use aluminium free deoderants/ dont use alfoil etc).... I'm not convinced, particularly be the effectiveness of al-free deoderants!
I'm sorry you have to walk down this road...... I hope it stays at a fairly low level for a long time, and that when he finally does pass from this world its from something less painful and devastating than full blown alzheimers.

 

[Gordon Gekko]

My mum passed away earlier this year after a loooong battle with dementia. I certainly found it the most difficult thing I have ever had to experience. It was heartbreaking, frustrating, devastating....... you get the picture.
sorry I cant give you better news!. I guess there are different kinds of dementia, and they progress at different rates. So, you wont necessarily have the same experiences. But, prepare yourself for emotional pain. Its very hard to watch the life being sucked out of loved ones, and watch their minds slip away.
Make sure he is prepared now, financially and with power of attorney in place, discuss nursing homes. I guess if he is open to discuss all those sorts of things, it will make it much easier. We had to move my mum into a nursing home against her will, because she was unsafe in the community. Its heartbreaking. I would suggest moving into some sort of low care supported accommodation earlier, rather than waiting for a crisis. That gives time for them to get used to it when they still have the ability.
Get to know your local aged care team..... get them involved early.
If you have picked it up early, there are medications that can be used, I believe. My mum refused to ever see a doctor, so we didnt have those options.
Make sure you have strong emotional supports around for you and your siblings.
In terms of genetics, and being worried about getting it.... I think all of my brothers and I also have the same fears. they say doing crosswords and puzzles, and general activity and health can help prevent it. In alternative health settings, they feel aluminium has a big role to play (so use aluminium free deoderants/ dont use alfoil etc).... I'm not convinced, particularly be the effectiveness of al-free deoderants!
I'm sorry you have to walk down this road...... I hope it stays at a fairly low level for a long time, and that when he finally does pass from this world its from something less painful and devastating than full blown alzheimers.

Hi Penny,

Thanks for your reply.

My Mum and Dad divorced when I was 4yo, 40 years ago And they still don't talk. Anyway, I never realy have had a father figure in my life, he remarried, had 2 more kids and got on with life.

I want to change our relationship for the better in what time we have left, he is the only grandfather my kids have known and they don't know him that well. I want to have fond memeries of him.

It all starts now.............

GG

 

[Sheryn]

Has anybody been thru this or going thru this with a friend or family member? Any advice? GG

Yes, my mother and mother in law have dementia.

Advise...
Access community social groups for your Father to attend for activites and mental stimulation during the day, now so he makes some new friends. Miminal cost about $12 a day and for this a bus will pick him up from home and deliver him back home, supply morning and afternoon tea and lunch + entertainment in a secure environment!

If he needs help this can be accessed after being approved via Aged Care Assessment Team, they may/will approve him for a flexible community care package, dementia outreach support worker etc. Cost is 17.5% of pension or a bit more if you have other income = well worth it.

We are in the process of sorting out what my mum needs atm.

One thing...
Since your Dad goes for walks and forget the name of koalas at some stage he may forget his way home so you need to have a strategy for when this happens.

Hubby's grandmother was found wandering down the median strip in her nightie about 2am quite a few years ago but her family had her name and address and daughters phone number engraved on a bracelet. She went into a hostel after getting lost the second time.

Lots of good things out there and basic support care available.


Cheers
Sheryn

 

[Gordon Gekko]

Yes, my mother and mother in law have dementia.

Advise...
Access community social groups for your Father to attend for activites and mental stimulation during the day, now so he makes some new friends. Miminal cost about $12 a day and for this a bus will pick him up from home and deliver him back home, supply morning and afternoon tea and lunch + entertainment in a secure environment!

If he needs help this can be accessed after being approved via Aged Care Assessment Team, they may/will approve him for a flexible community care package, dementia outreach support worker etc. Cost is 17.5% of pension or a bit more if you have other income = well worth it.

We are in the process of sorting out what my mum needs atm.

One thing...
Since your Dad goes for walks and forget the name of koalas at some stage he may forget his way home so you need to have a strategy for when this happens.

Hubby's grandmother was found wandering down the median strip in her nightie about 2am quite a few years ago but her family had her name and address and daughters phone number engraved on a bracelet. She went into a hostel after getting lost the second time.

Lots of good things out there and basic support care available.


Cheers
Sheryn

Hi Sheryn,

Thanks for your reply.

A major problem with my Dad's situlation is that he lives in the country, well about a 100km out of Melbourne, in a very small town (Petrol station, Pub and General store). He loves his garden, his garden is his life.

A lot of decisions need to be made soon.

GG

 

[lizzie]

Sheryn and Penny have given some excellent advice.

We too went thru the process of early and middle stage dementia with my mother in law, until she passed away with a stroke earlier this year.

A few things to be aware of - there are excellent sites that give advice, google them - but one biggie was that I found my MIL began to revert back to the behaviour of a child - getting younger and younger in behaviour.

Some days it felt like I had two 5 year olds in my care - one five and the other 75! Their attention spans, tolerance level and demanding behaviour were so similar that sometimes I forgot one wasn't a child.

It also means you have to talk to them at the mental/behaviour level that they are at. Explanations, persuasion and direction.

I also found (and is quite common) that my MIL became very paranoid - would check the locks over and over, become clinging with my FIL and fearful if he left her sight, hide things (and forget where they were hidden - which means you have to check every scrunched up tissue and plastic bag before throwing them out) and refused to take medication from anyone but my FIL. A lot of this was middle dementia - but you need to be aware that this progression will occur.

After observing and reading, you will also find that as the disease progresses, the person "worst" traits come to the fore.

If they were a little bossy, they will become unbearably bossy. If they were mildly violent, they will become quite agressive etc. My MIL was an opinionated nagger, but before dementia her social skills could control her tongue ... unfortunately when dementia progresses, they loose the social ability to control their actions and play out whatever the unpleasant trait is to it's fullest.

Unfortunately it is not the good traits that come to the fore, but the socially unacceptable ones.

You may not experience any or all of this with your father, but you do need to be aware.

Make sure you have power of attorney's in place - even if it's not you that can sign. Do not hesitate to have your father assessed at any time as he will need a doctor's authority for a nursing home placement, unless you go private.

You will also find that it is not a steady decline - but rather they have an abrupt and noticable drop in ability, then plateau for a while (no one can tell you how long), then another drop. The plateaus can last for months or years.

Good luck with it all. Personally I hope I just fall of a twig at 104, with all my facilities intact ... an awful thing to say, but it was a blessing when my MIL passed.

 

[geoffw]

My Mum has been going through this for the last several years. It's terrible to see somebody who had one of the quickest minds I've seen deteriorate so much.

It was a struggle to get her to care- and she still does not accept it. We probably put her into care too late- she was already struggling with day to day tasks. My sister, who has coped with much of what has been going on (I am interstate) was constantly finding things in the wrong places- ice cream in the cupboard, peanut butter in the freezer.

She never wanted to be like my grandmother, who was ten years a shadow of her former self, though as a stroke victim.

When I was down there last year she could not remember things five minutes ago- but could remember many details about a big storm three weeks previously.

In care, she doesn't think that there is anything wrong with her, and is constantly seeking to get back to her place. She has been almost in tears looking at those around her, not accepting that she herself has approached a similar condition.

She had an operation a few weeks ago- I went down at short notice because we thought we were going to lose her. Her body though is a lot stronger than her mind and has physically recovered well. Her mind though has deteriorated.

If your dad accepts his condition, talk to him now. Discuss options like care while he still has the ability to reason. And, as others have said, arrange your power of attorney.

 

[chrispy]

My father had Alzheimers and my mother has Dementia. My two sisters and I feel we are walking a fine line!!!

My Dad knew what was happening to him and he hated it. He died at 80 after a fall, he basically gave up.

My Mum is now 95 and in a Home specialising in dementia, this is in the UK. She just keeps asking to go home, but its not the home she shared with Dad, she has gone back in her mind to the home she lived in as a small child. She keeps asking to see her Gran, who died 60 years ago.

She has forgotten that Dad and her Gran have died, we have been instructed not to tell her, as its like she is being told for the first time, every time, so we make up excuses, like Dad is working, etc. Gran is out with her friends having a guiness, etc.

Mum is very strong, she has had 4 striokes and recovered from each one.

She loses all her belongings and somehow collects other peoples. One week she will not have any slippers but the next week she could have 10 pairs.

My sisters visit as often as they can and I fly over to visit her when I can. She knows us but doesn't understand that she is our Mum.

Chris

 

[FormerLurker]

Patience is a big thing in these situations - My nanna has dementia and has for the better part of a decade now and you need to get used to hearing the same questions and having the same conversation over and over again. If your dad goes like my nanna he will possibly start being afraid to go out due to many factors (forgetting why he's gone out or even how to get back etc.) so if you can arrange for siblings etc to assist with shopping and just getting him out of the house regularly so he doesn't develop a fear of going out thats a +. Basically you need a strong family network to pull together and help out as best they can.

Best of luck.

 

[Cupcakes]

My nan has it She loves looking at old photo albums and talking about her past. It always seems to make her happy and calm her down! She can remember every detail of her youth but can't remember what happened a few minutes ago.

 

[Macca]

Hi,

I notice a few have suggested Power of Attorney ASAP but be sure to also get guardianship authority as well.

P of A does not cover medical decisions AFAIK but Guardianship does. We needed these for my mother, fortunately we had them.

I can recall finding an old guy roaming the streets at midnight looking for the train station to "go home". We asked him where he lived and he said a town 400 ks away so we took him to the police station.

As soon as he saw the police he stood up tall and said 'Yes Officer" Cop asks "where do you live ? He gave an address 200m from our place.

We offered to take him home, so the cop rang home and spoke to his wife, she said OK and we take him home about 1am. It seems she has to always keep the doors locked or off he goes looking for the train station to go back to his childhood home.

I think an ID bracelet is a good idea as he may decide to leave his current home and return to some former address. Most people would give an old guy walking a lift, not knowing the problem and take him away from where he is known.

 

[BayView]

Hi All,

My 70yo Dad has just been diagnosed with early stages of Dementia. His next step is to have a MIR scan to check which part of his brain is effected.

In the last 10 years, he has had a hearing problem, so a lot of things werem put down to that. These days he takes his dog for a walk thru the bush and sees a koala. He comes back from his walk and says he saw one of those "furry" animals up a tree again, he can't remember what they are called.

Has anybody been thru this or going thru this with a friend or family member? Any advice?

We (family) knew something was wrong, Docs have just comfirmed it. It's a very sad day.

I'm also worried about myself, for some reason, I can see myself going down this track too. I know the answer is to keep the brain active, read alot. Any other advice.

Cheers

GG

Yes.

My Dad died in 2006. He had dementia before this.

It started off with forgetfulness of small things, then he would stop in mid-sentence because he had forgotten what he was talking about, and became repetitive...a lot like me now.

Seriously though; then his health went downhill very quickly from an energetic, athletic, vibrant man to a doddery old wizened mess.

Very sad to watch, and it was actually a relief when he finally did go - took about a year.

Not a relief for me; more a feeling of "thankfully his pain has ended".

 

[lizzie]

yes - the short term memory goes completely to pot very quickly.

my MIL would get up from the lunch table, sit in her recliner chair and then ask what were they having for lunch. you would hear the same story over and over and over, so learnt to just grit the teeth, smile and nod.

it is a hard path to tread. i have written in my living will that if i unable to look after my personal needs than, if i am on any medication, i want my medication stopped.

after working as a volunteer in a dementia ward - and watching the gaga patients being pumped full of medication to prolong their lives ... not for me thanks.

 

[Gordon Gekko]

If your dad accepts his condition, talk to him now. Discuss options like care while he still has the ability to reason. And, as others have said, arrange your power of attorney.

Hi Geoff,

Thank you for sharing your experience.

We have already setup power of attorney, my sister has put her hand up for that.

cheers

Jay

 

[Gordon Gekko]

Very sad to watch, and it was actually a relief when he finally did go - took about a year.

Not a relief for me; more a feeling of "thankfully his pain has ended".

Hi Marc,

It must have been very hard. My Dad is pysically fit and loves his garden.

I haven't had a relationship with my dad, i want to start now whilst i still have time.

Jay

 

[Macca]

Hi Geoff,

Thank you for sharing your experience.

We have already setup power of attorney, my sister has put her hand up for that.

cheers

Jay

Hi GG,

Please investigate guardianship as well, we were told that P of A does not cover medical treatment or being able to put them into care. Which, unfortunately may become a necessity.

May I also suggest that you have more that one person with P of A and Guardianship as accidents do happen and your Dad may be stuck with the state making decisions because your sister is sick ( or worse)

 

[pennyk]

Hi GG,

Please investigate guardianship as well, we were told that P of A does not cover medical treatment or being able to put them into care. Which, unfortunately may become a necessity.

May I also suggest that you have more that one person with P of A and Guardianship as accidents do happen and your Dad may be stuck with the state making decisions because your sister is sick ( or worse)

If you can avoid it, by your father making decisions about care early, I would stay as far away from guardianship as possible......
We found it one of the most frustrating parts of mum's journey. We had full guardianship (financial, health etc), and they questioned every decision. Its so frustrating to be taking decisions that you already know are going to cause grief (but need to be made), and then to have to get approval to do every little step, and to have to argue about why you are doing them. I guess the financial part was definitely the worst, which you can avoid by power of attorney, but the whole experience for us was a nightmare.
but I agree with the suggestion of having 2 people either in guardianship or PofA. We had my brother and I (I have 5 siblings) and it helped to share the load. He looked after the finances, I looked after the care decisions/ nursing home communication etc. I dont think either of us would have managed looking after the whole process.

 

[Macca]

If you can avoid it, by your father making decisions about care early, I would stay as far away from guardianship as possible......
We found it one of the most frustrating parts of mum's journey. We had full guardianship (financial, health etc), and they questioned every decision. Its so frustrating to be taking decisions that you already know are going to cause grief (but need to be made), and then to have to get approval to do every little step, and to have to argue about why you are doing them. I guess the financial part was definitely the worst, which you can avoid by power of attorney, but the whole experience for us was a nightmare.
but I agree with the suggestion of having 2 people either in guardianship or PofA. We had my brother and I (I have 5 siblings) and it helped to share the load. He looked after the finances, I looked after the care decisions/ nursing home communication etc. I dont think either of us would have managed looking after the whole process.

Hi Penny,

If they don't have guardianship and his mental state deteriorates to the point of being unable to make sensible decisions, who then makes decisions for him ?

We were told they would be made by the State Guardianship Board and they would decide what would happen with our mother in her final days. We weren't happy with this and so we created the guardianship so we could make all the decisions.

We were questioned, I suppose so that the hospital were covered in case we decide to sue, but although it was hard, after it was done we did all feel that we had "did our best for Mum"

Very difficult situation to be in and very emotionally draining as you know, I can only wish GG all the best and hope his Dad does not deteriorate too far or too fast.

 

[pennyk]

Hi Penny,

If they don't have guardianship and his mental state deteriorates to the point of being unable to make sensible decisions, who then makes decisions for him ?

We were told they would be made by the State Guardianship Board and they would decide what would happen with our mother in her final days. We weren't happy with this and so we created the guardianship so we could make all the decisions.
.

I guess our frustration was that we were still not able to make decisions, even with the guardianship. It felt like everything we did was questioned, or we had to write some report on, or justify..... as if they knew what was better for our mum than we did. Extremely frustrating!!
If GG's father can make a decision to go willingly into care, at the appropriate time, rather than against his will, then there is really no need for guardianship. Once you are in, then there is an implied permission for them to provide ongoing care and treatment (and probably a signed permission as well)
In fact, the Board didnt want to maintain the guardianship (apart from financial guardianship), once mum was in the nursing home, because they said it was no longer necessary. We were concerned that if we had to move her to a high care facility, that we would have to go back through the whole application process again. So, we fought to keep it. but I really hated dealing with the bureaucracy and quibbling over things that we had to deal with.