Should we push our dad to do more?

[HeadFairy]

My dad has lost the will to do anything. He was diagnosed with Alzheimer's last year, and apart from a few problems he's been fine, managing at home, lots of post its around the house telling him where things are etc. My mum is with him, so he's well cared for, but like so many, lockdown was hard for him, the lack of stimulation has meant he now does nothing. He used to walk and get the paper daily, and then spend the day reading every inch. Now he doesn't do that, we're all on holiday at the moment and he's sleeping tons and when he doesn't he just sits and does nothing. What's the best thing for him, should we leave him to do as he pleases, or should we cajole, push and encourage him as much as possible? He's not distressed when we get to do things, but it is a lot of effort, I just want to know if it's the best thing for him.

I would encourage him to do things- it would be good for his health rather than sitting doing nothing. If you don't use it you lose it! It is very normal to start sleeping more but when he is awake I would try to engage him in things.

I think you really need to have a good try and getting him going again. In my experience it’s when they lose motivation and quality of life like this, they really go downhill quickly. I’d have a try at getting back into his old routine, or even try and help him find new interests to keep him busy

I think this may just be a progression of his Alzheimer's. Same thing happened with my DFIL. Initially he would potter about, buy and read the papers, make a cup of tea. Then he just used to open the paper. Then he would just sit and stare, interspersed with naps. Eventually he was unable to be left alone and he went into a lovely care home.

Thanks for the advice, I appreciate the progression of his dementia is going to see him wanting to do less and less, but I wasn't sure how much we should push him to keep up doing things. Yesterday he grumbled like crazy when we dragged him out 30 metres from the house to watch dh and ds play tennis, but when he got there and sat down he had a lovely time, we chatted about Wimbledon, he remembered finals from previous years and we talked about how we'd missed the tennis this summer (he couldn't remember why it had been cancelled) but I can see how beneficial it is for him, I just didn't want the effort to get him to do things to outweigh the benefits of whatever we do.

One of the biggest symptoms of dementia is apathy.

If your memory is affected, how can you remember that you want to go for a walk or that you might enjoy it? Or plan an activity?

He needs someone to do all this for him and as you have found once it is done for him, he really enjoys it.

This is why in care homes they have activity programmes and we get people to go to day centres - so they keep doing things. So yes, please do keep pushing him along.

That's really reassuring that we're doing the right thing, thank you.

When my dad had alzheimers i joined the alzheimers society who send out a regular newsletter which has useful information in it as well as advice and letters from people in the same situation, i also found some patient forums online where carers and those suffering from dementia could post their experiences and it really helped to get an understanding of how my father might be feeling.

Is he depressed?
Can he still actually read? My Mum used to do a good job of studying the paper very hard, but could no longer actually follow a storyline. She was mostly looking at the pictures. It can be quite demoralising when you are aware you can't do certain things anymore.

Thanks Bearmur, he can't read anymore really, his eyesight is terrible, he can use a heavy duty magnifying glass but he looks at the headlines and pictures. He can't really follow films and tv programmes much either. He does still watch sport, so it's great it's back on telly again, because it was awful when he didn't even have that.

It's definitely the apathy. He needs prompted, or if it is so bad that giving encouragement and reminders to do things are not enough to get him doing things, you then take it out of his hands as he is no longer able, and so you plan these things for him. Then tell him in advance and physically take him to do whatever little things he can still take part in. He will still feel the joy once actually doing said activity, and spending time with loved ones.

If left to his own devices he will continue to do nothing. If he say for example used to enjoy listening to music, but he no longer plays anything anymore, it's not that he doesn't like it anymore, it is just that his mind doesn't think of things to do, and have the brain connections to prompt an action and to see things through. So instead, you could play the music he likes for him for a while. An hour or two, not too loud. Routines are best. They can put up a fight to do anything and struggle with small changes in routine. Another part of the apathy is not just stopping enjoyable activities it can be the daily tasks they don't think to do anymore like brushing their teeth, bathing, changing in to fresh clothes etc.

Apathy can be a real thief of joy if left to it. People can mistake it for depression and even laziness. (If not aware or well informed) You are doing great and doing everything right. It's definitely worth that initial fuss to get him doing things. That sounded like it turned out to be a nice day you had. Keep at it.

Ps I don't have Alzheimer's, but I do have moderately advanced dementia with a neurological disease that is similar, and apathy is my biggest struggle. So I do know what it feels like to be the person with it, and that you can still feel that enjoyment. I just do better when things are arranged for me and people get me doing things. Apathy along with a flattened affect can make patients seem like they no longer care about others or have or show emotion. I know I still love, feel and care deeply, but I am unable to naturally express it through voice tone, facial expressions and thinking in the moment when I am with a loved one to say unprompted that I still feel things for them, that I worry and care about them. I have just enough ability still in me that I can express it in words and writing but it is at weird random times when I am left with my thoughts like in the night when everyone is asleep, because I have no distractions. When there are lots of noises and people around or even just one person talking to you, it's all you can do to concentrate on what they are saying, understanding it and forming a response etc that I tend to forget to tell them these emotions.

Not trying to hijack your post or make it about me, I just wanted to offer possible insight that others don't have. Wishing you all the best.

MiL very similar, we used to think last year she should do mor ie clubs/garden walks but now she's past that stage and increasingly sleepy but enjoys 'the little things'. She's not upset and can still read but whereas she used to love reading the paper now it's too much effort to focus. She still loves TV, esp mild comedy & sports, and listening to her favourite Elvis songs if somenone turns on the CD for her, she doesn't have the initiative to do it herself. She is recently widowed and has carers three times a day. Also loves regular skypes/zoom to chat to grandkids (v giggly, a lot of wit still intact) and turning tea & a bisquit into a bit of a treat/event, she still really enjoys her food. Just before we got the carers she didn't eat or drink properly (but had us fooled that she did) and got very ill. After she's had carers come in it's like she's aged backwards in some ways, it's been such a relief.
She also loves the hairdresser and strolling around the supermarket but that's obviously not possible now sadly.

I'm just so happy (although it sounds awful) that she's smiley and content and not in distress, we just try to be in the now with her as much as we can because next year it might be a different story.

bensonstabler thanks for this it’s helping me understand my mum. Any other thoughts you care to write would be very valuable! Sending you hugs and best wishes.