What was your parent with Alzheimers like in the earlier stages? Is this normal?

[sadpapercourtesan]

I have my elderly father staying for Christmas (he's here longer because we all caught Covid and are self-isolating). He was diagnosed with Alzheimers after a brain scan a few weeks ago, but the memory problems have been noticeable for a couple of years now.

Since he's been staying with us I've noticed a few new things which I think may be symptoms, but I'd really appreciate any insights from more experienced posters. Dad and I were always incredibly close, but I have seen very little of him due to the pandemic and living 200 miles apart, so the changes in him are really stark.

1. he sleeps more than half the day, every day - he's still not up now. Have gently offered tea a couple of times, but he hasn't got up. Yesterday it was nearly 4pm. He still goes to bed at a normal time, but I've heard him moving around in the night a few times

2. he mutters and whispers under his breath a lot, and waves his hands as though he's gesticulating something. He doesn't seem distressed while doing it, sometimes his eyes are closed.

3. he has gone very quiet, for a man who used to dominate every conversation. He's not interested in his usual passions - politics etc. He's avery passive and seems content to just watch conversations happening. I know his hearing is an issue, and I try to include him by speaking really clearly etc, but he just doesn't want to engage much.

His memory problems I would say are fairly early stages - he asks the same questions a lot and has lost a lot of memories that would previously have been automatic, but he can hold a conversation lucidly, still has his sense of humour, is still "himself", despite the new behaviours.

Can anyone help give me a bit of context for where he is, and how things will progress? It's all new to me.

I don't know if its typical but my mum has had a recent diagnosis. I would describe it as "eating away" various things, she now struggles with writing, is forgetting how to cook things , has difficulty with computer. Also she seems more easily overwhelmed by social situations, busy shops etc. And she'll tell me the same things several times. She's very much still the same person. We just want to make the most of the time we have now.

Bless him, he must be very anxious about his recent diagnosis. That could account for him suddenly being quiet.

Can’t help first hand but I do work in care homes with people farther on living with dementia/Alzheimer’s. Many people do sleep a lot of the day and can sometimes get out of sync with normal sleeping pattern.
Did your DF have Covid could it be fatigue from that infection as well?
Some people see/hear things that are not there which could be the muttering/gesturing.
Also infections such as UTI can cause delirium and worsen symptoms. It’s good that your DF can chat and have a good conversation when he is awake though. Hope more people will come along with first hand info for you.

My dad was diagnosed with dementia 8 months ago. I believe he’s considered early stage but to me he’s deteriorated a lot. Like your dad he sleeps a lot (this may be to do with the medication he’s on though) and the biggest change is the lack of conversation / he was always chatty and witty so it’s v marked. We think he struggles to remember or find the right word and is embarrassed to make the mistake when trying. If I engage him he will respond but the spontaneous chat has gone. He sits quietly a lot of the time but doesn’t seem distressed. He’s losing the ability to read and right and can’t manage simple jigsaw puzzles. He had an absolutely brilliant mind and a great career, such a horrible disease. The same gentle person is still there though although I think in many cases the personality changes.

*losing the ability to write, not right!

I think he must be quite anxious, you're right when he is talkative, it feels like he's putting on his old self-assured personality, but it tires him out and when he thinks nobody's looking I see him chewing his lip and looking quite unsettled. I wish I knew how to put him more at ease, but I don't know how. I've taken to putting a long playlist of his beloved folk music on (we played in a band together for years) and just listening to it with him. We can both make the odd comment but there's no pressure on him to talk, but we're still sharing something.

@Tabbypawpaw that sounds very similar. Dad was an absolute force of nature, a, incredible mind. I have this knot of dread in my stomach all the time now, knowing I'm going to have to watch more and more of him slip away. I love him so much. I hate the thought that he's anxious and that's why he's quiet, he won't talk about the diagnosis at all, he says there's nothing wrong with him.

My mum has dementia rather than Alzheimers and it sounds quite normal.

1. They do sleep a lot more and a lot deeper. However, my mum does get up by 9 every day and get dressed.
2. My mum mutters a lot and moans to herself and tuts. It's very irritating as I think she's aiming at me. But actually she's not. I think a lot of it is self-comfort. And she does live on her own and we who live on our own do tend to talk to ourselves more.
3. This is very normal. It's very difficult for them to focus and concentrate for any length of time. My mum feels happier listening to conversations so she can drift in and out of concentrating. She's also aware that she might say something inappropriate (as in off-topc, not rude) so is cautious. Also she's developed more anxieties so these interrupt her thoughts too. We have to speak slowly and in more simplified sentences so she fully understands.

My mum as never lost her sense of humour, although she takes things more literally these days. Her memories are going more but things are clearer from long ago. A lot of what she says sounds like gobbledegook because she can't remember the right words but she knows what she wants to say and, strangely, there is sensible thought there. So many times I've thought she's telling me stuff she's imagined but its turned out to be true.

It's a horrible illness.

Sounds familiar OP. I first noticed signs in my mother in 2012 and she was like your Dad by 2015 I’d say. She’s pretty bad now but managing with a very robust care package and a weekly cleaner who cleans for an hour and drinks tea/chats for an hour.

I don’t want to pretend that his path will be easy OP, but you’ll learn to live with it and adjust.

@sadpapercourtesan it’s so horrible isn’t it. The biggest relief for me is that he’s not distressed and doesn’t seem unhappy. But he was always a busy person never still always helping out with stuff and now he just sits and sits. My parents live hrs and hrs away but trying to see them as much as we can. When I saw my dad before Christmas it was good to look through old photos together and check who people were (in pics from his childhood), also as you say - music. One night I washed up and he dried with an album of 60s music on, no pressure to say anything that way.

My mother has vascular dementia, first diagnosed 9 years ago, I am also a HCP so have professional experience of looking after people with Alzheimer's.

1. The sleeping longer is quite common with people with dementia, it can also present as very early rising so the complete opposite. One thing to consider here is that he might be depressed as this can be a symptom of depression. The other thing may be that he just needs a rigid routine that he sticks to. For my mum we have carers every morning so she's up at the same time and bed at the same time. This helps a lot.

2. if he does not seem distressed would not worry about this. Maybe talking to himself helps him function and think more clearly?

3. this is very normal as people with dementia find it very hard to keep up with conversations. So my very social and chatty mum became much more quiet very early on after her diagnosis. It took me a while to realise she keeps on forgetting the trail of the conversation. I found this part the hardest personally.

Is he on treatment for Alzheimer's? It's very hard to say how he may progress. Does he manage with cooking, eating, tidying up and personal care at the moment. One bit if advice I would give is encourage him to do all he can for himself for as long as he can. Are there any centres near where he lives for people with dementia that he could access?

I’m sorry to hear this my dad has dimentia and a lot of these issues resonate with him, especially about being withdrawn although he was never a chatty man.

He has been prescribed mirtazepine at night which is a mild anti depressant but also an appetite stimulant as he had gone off his food and I would say that has somewhat helped.

This sounds so difficult for you 💐

If his hearing is an issue would he consider a hearing test and possible hearing aids? With hindsight my mum should have insisted on this for my grandma; in the early stages she couldn't hear well enough to follow conversation and just retreated into herself.

I know someone in the early stages of dementia who now has hearing aids that have made such a difference as he isn't so isolated now that he can hear better.

Make sure you sort Power of Attorney asap if you haven't already. There's a huge backlog.

Power of Attorney and a hearing assessment are two of the main bugbears at the moment - he won't discuss either he insists there's nothing wrong with him and no need. His partner and I have been trying for months to get him to agree to POA and he just shuts us down.

Getting PoA is going yo be difficult now. Paranoia and self-delusion will have started. Does he have a friend that has given PoA to another person? It might be helpful if they spoke to him to explain the advantages. They often believe other people when they won't believe family.

In the earlier stages Mil had paranoia, and would get quite cross suddenly, she also said inappropriate things about people. I was the one that spotted it was Alzheimer’s, but no one else believed me, they all said she was just turning into a nasty old woman

She did need more sleep, and now things are a bit more advanced shecan sleep for 16-20 hours. Fil gets very cross when she refuses to get up in the morning. We’ve tried to persuade him to have a carer to help but he flatly refuses.

My dad is now 5 years from diagnosis. He was never the most sociable creature but the power of conversation has gradually faded away, although last time I was speaking to him, he made a pun, so there's a glimmer of him still there. He sleeps a lot in the day but would often be up in the night. He has got more paranoid, but really just enhancing a character trait that was always there, he became very anxious, especially regarding my mum. He's been in a care home since the summer and is much more settled now, has a little reality that he's abroad somewhere (he was always a traveller).

My DGM had dementia and she slept in when she was always an early riser. The most distressing thing was her moments of clarity.

Luckily we had power of attorney before this because she initially didn't want the responsibility of money. But during dementia she worried about not having any.

We tried to keep her remaining pathways working. It is so hard.