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How fast is the decline with dementia and care

DaveCr1968

Registered User
Jul 5, 2020
58
Hi all

Dad was diagnosed with mild cognitive impairment in 2012; basically short term memory loss. It has got slowly worse since then and mum did a fantastic job dealing with it, although of late think she has struggled because of repeatedly being woken by dad at night.

To cut a long story short, I was looking after dad while mum was in hospital and the memory clinic referral was done. He now has unspecified severe dementia. The symptoms align well with Lewy Body. Sadly, my mum passed away suddenly and unexpectedly.

I've noticed a big difference since Xmas and my mum's friend came around yesterday and said he had deteriorated a lot in two weeks.

So, how fast is the rate of decline and what can I expect next?

I have been told by dad's GP that he should not be left on his own for significant periods of time and definitely not overnight. He thinks residential care is inevitable and have a second discussion with SS next week. I guess self-funded overnight care is possible but if he declines much more, we will just be delaying residential care.

What are people's thoughts?

Regards and thanks

Dave
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,094
Kent
Hello @DaveCr1968

You and your mum have done a brilliant job of looking after your dad for eight years. It`s really difficult to understand the progression of dementia it seems to vary so much in different people.

I imagine other underlying health conditions are contributory factors and also the type of dementia and what medication is prescribed.

My husband had relatively slow progression for about four years then it seemed to quicken, but he had diabetes Type 2 and was also on antidepressants and an antipsychotic which I was told would affect his mobility.

Some people experience a gradual progression and then a big dip, others experience a rapid progression.

I can only suggest you continue to do the best for your dad as you have been doing for eight years.
 

DaveCr1968

Registered User
Jul 5, 2020
58
Hi Sylvia

Thanks for the advice and yes, mum did most of the work and did brilliantly, although I think we should have got help for her. I think it was gradual progression and now we are seeing a much faster dip. The rate of decline since Xmas is significant (he now thinks I'm his older brother) and indeed over the last few weeks has been noticeable.

Now mum has passed away, things have now changed significantly because I live 180 miles away and think dad needs professional care. I just want the best for him to keep safe but am very nervous about residential care and also neither mum or dad wanted it. I guess things have moved on now.

Dave
 

Jessbow

Registered User
Mar 1, 2013
3,119
West Hertfordshire
I think it hard to diffentiate between what someone wants and what they need.

Clearly he has a need for residential care, soon if not now. ( there will be many things through life he's needed/wanted... Probably didnt get all of those either)

I was nervous/anxious and felt i'd let my dad down. He had looked after Mum for a long time, papered over cracks- we didnt know half- then he died.
We cared for my Mum as long as we could and we had to do the right thing and find a nursing home. Was the best thing we ever did, both for her and for us. She ended her days well cared for safe and reasonably happy.
 

canary

Registered User
Feb 25, 2014
13,894
South coast
Hi @DaveCr1968

My mum moved into a care home, even though she fought against it and tried to make me promise that I would never do it.

Actually it was the best decision I made as mum thrived there. She loved having someone around night and day, she responded to the simple routine and all her anxiety went, she made friends and joined in the activities. She was happy and well looked after. She used to say to me - "they all love me in here" - and she was right, they did. She was looked after right up to the end and passed away in her care home surrounded by people she knew.

It wasnt like that to begin with, though. The first few weeks were a bit fraught and she was constantly trying to "go home", so I wouldnt worry too much about the initial couple of weeks quarantine. He may feel that he is sat looking at four walls all the time, but it would probably be the same at his home! At least you would know that he was being kept safe and looked after. Care homes are being opened up again soon and Im sure that by the time you have managed to arrange a care home and he has gone through the 2 weeks period, you will be able to visit again.
 

DaveCr1968

Registered User
Jul 5, 2020
58
Hi Jessbow

That is exactly it. I feel like I am letting both down, particularly since my mum was adamant that she would look after dad and never put him in a care home. However, speaking to her good friend yesterday, we pieced a few recent things together and think mum realised help was needed.

I've even thought about resigning from my job, moving down here and becoming my dad's full time carer, but have been told in no uncertain terms not to do this because the way he seems to be deteriorating is worrying and I am not a professional carer. Plus there are my own long term implications to this to consider.

Thanks

Dave
 

DaveCr1968

Registered User
Jul 5, 2020
58
Hi @DaveCr1968

My mum moved into a care home, even though she fought against it and tried to make me promise that I would never do it.

Actually it was the best decision I made as mum thrived there. She loved having someone around night and day, she responded to the simple routine and all her anxiety went, she made friends and joined in the activities. She was happy and well looked after. She used to say to me - "they all love me in here" - and she was right, they did. She was looked after right up to the end and passed away in her care home surrounded by people she knew.

It wasnt like that to begin with, though. The first few weeks were a bit fraught and she was constantly trying to "go home", so I wouldnt worry too much about the initial couple of weeks quarantine. He may feel that he is sat looking at four walls all the time, but it would probably be the same at his home! At least you would know that he was being kept safe and looked after. Care homes are being opened up again soon and Im sure that by the time you have managed to arrange a care home and he has gone through the 2 weeks period, you will be able to visit again.
Thanks for this, my dad is good around people once he knows them. This has given me some confidence and there are some good homes in Cornwall. I also have my mum's friend (the retired care home inspector) to advise me.

I'm playing it by ear whether or not I need a deputyship.
 

canary

Registered User
Feb 25, 2014
13,894
South coast
I'm playing it by ear whether or not I need a deputyship.
I had to get a deputyship for mum in order to pay her care home fees and sell her bungalow. I didnt go for a Health and Welfare deputyship as I was advised that they are very seldom granted (and you still have to pay).
 

DaveCr1968

Registered User
Jul 5, 2020
58
Good advice, I suspect I will do the same when SS do the capacity assessment. More complicated with me because they were tenants in common and since my mum passed away, I own half the property in trust. SS can only put a charge against dad's half.