Parkinson's and Dementia (Maybe Lewy Body)

[worsy]

Anyone any personal experience of family with this?

Further to

https://www.pistonheads.com/gassing/topic.asp?h=0&...

FiL has been diagnosed with Dementia and has just been invited to a Parkinson's diagnosis appt.

Aged 84

Symptoms at the moment.
Sleeping a lot during the day
Vacant expression
Shuffling
Incontinence
Complains of being depressed.

[wingnut1980]

Parkinson's (PD) yes, diagnosed at 42yo roughly two years ago...

Dementia, no, probably have that to look forward to

PD sucks quite frankly, its symptoms vary a lot between patients and is a different challenge for an 82 yo than a 42 yo. The only advice I can give is to join all the forums, there are loads - Parkinsons.org, and loads on Facebook. They will give the best advice to your specific symptoms.

The symptoms are mental as well as physical - route cause is the death of the brain cells that produce Dopamine, and you can imagine what that does to your moods. Not sure how capable your FiL is of exercise, but its about the best thing you can do really.

You have my sympathies. Good Luck.

[worsy]

wingnut1980 said:

Parkinson's (PD) yes, diagnosed at 42yo roughly two years ago...

Dementia, no, probably have that to look forward to

PD sucks quite frankly, its symptoms vary a lot between patients and is a different challenge for an 82 yo than a 42 yo. The only advice I can give is to join all the forums, there are loads - Parkinsons.org, and loads on Facebook. They will give the best advice to your specific symptoms.

The symptoms are mental as well as physical - route cause is the death of the brain cells that produce Dopamine, and you can imagine what that does to your moods. Not sure how capable your FiL is of exercise, but its about the best thing you can do really.

You have my sympathies. Good Luck.

Thanks for taking the time to respond. Sorry to hear about your diagnosis.

Exercise is not really an option. Walking to the end of the road is about where it's at now. I've first hand experience of Dementia with my Gran and my MiL so know what to expect there. I suppose i'm trying to understand what the journey looks like and how long it might be, to try and help my wife make the best decsions.

[Castrol for a knave]

worsy said:

Anyone any personal experience of family with this?

Further to

https://www.pistonheads.com/gassing/topic.asp?h=0&...

FiL has been diagnosed with Dementia and has just been invited to a Parkinson's diagnosis appt.

Aged 84

Symptoms at the moment.
Sleeping a lot during the day
Vacant expression
Shuffling
Incontinence
Complains of being depressed.

My dad has dementia. Just spent a fun weekend with him at the local hospital as he had a psychotic episode then went into a rigor, due to a temperature from a chest infection. .

That list looks familiar.

I would recommend you get the GP on side, and then with his/her help link into your local authority. they should have a gateway to care or similar programme that will help you get access to the various care packages. That can be anything from help with a Blue Badge to linking to a care at home provider, who can do home visits and help your MiL. Thing such as incontinence pads, zimmer frames and such will also be provided at nil cost. They will also sort access to a sitter - who can stay with the sufferer while the carer gets time out. People forget that it is very difficult to get out when someone with dementia needs 24 hours care and monitoring.

Local authorities tend to prefer care at home, as it is cheaper than a care home and for many, the familiarity of home makes the sufferer more relaxed and carers able to sort out the incontinence and feeding.

If you haven't got one sorted already, contact Dementia UK and get an Admiral Nurse arranged - think McMillan for dementia. Again, they are great for helping with things like respite care and working with both sufferer and carer.

Despite what you might think, the resources are quite extensive and I have been surprised (pleasantly) by how efficient a lot of this process is and what support there is out there.

My dad was on meds that initially slowed his dementia. it stopped the "sundowners" - the episodes of confusion that tended to kick in between 5pm and 8pm. These are now back in force, but it does give you some breathing time to arrange t he care and sort the house out etc.

He is also on citalopram, to take the sharp edges of his mood, which does help.


As an aside, it is helpful to have photo albums and anything he particularly likes on hand. When my dad is kicking off and in his "I want to see the manager" mode, we can get him back in the room, literally and figuratively, by sitting with him and going through his old navy photos and our holiday photos etc.

Our Admiral nurse said to think of Alzheimers and Dementia like a library. The newer books will gradually disappear, but the old classics will be there, and he will tend to remember them, on the bottom shelves, waiting to be re-read.

I wish you well on this journey - it is hard, but it is also uplifting, seeing just how people help and give care, often for little or no reward.

[worsy]

Thanks for the informative post. Fortunately (ho hum) we have good knowledge of the care available, having not long gone through the same with the MiL.