A rollercoaster ride

[pahaps]

I'm relatively new to this forum and only started posting in mid-August when Dad came to visit for 10 days. He was diagnosed with AD about 18 months ago but has changed so much in the last 3 months or so. I found his visit intensely stressful for many reasons and it was a milestone in his - and our - journey. It gave me a glimpse into what life is like for Dad and those who care for him.
I am 250 miles away from him and Mum and caring from a distance is becoming more and more difficult. I say that in the knowledge that many people posting have it far worse than me and I can only offer sincere best wishes to all of you out there dealing with your loved ones in the best way you can.
I get to Liverpool when I can which is largely restricted to school holidays as I'm a teacher. I'm going up in October to give Mum a break. My brother also does a great deal for them both but our relationship is not good.
My missus is a nurse and has been very supportive in offering her advice to me and my folks. She's going through a very difficult time at work and I've tried very hard lately not to overload her with my feelings about Dad.
That's why I'm finding this forum incredibly important at the moment as an outlet for my thoughts. I'm sorry for not offering advice to others as I still feel like a novice. I am truly grateful to anyone though who has offered advice, support and kind words to me though. Thank you.
This last week has epitomised the rollercoaster ride that is living with dementia. In the course of several phone calls I listened to Mum as she outlined another in a series of aggressive outbursts from Dad. These happen mostly in the evening (sundowning?!) and have become more sexual. This is really upsetting for Mum and she had to be rescued by her very kind neighbours a few nights ago. They're both well into their 70s and it's hard to imagine my Dad behaving like this.
On the other hand, a visit yesterday from the Community Matron was hugely successful. Mum was given loads of support with a whole range of issues - a new grab rail near the toilet, a visit from the team dealing with mobility, new incontinence pads, etc.
Another really worrying aspect of my Dad's obvious decline is his lack of mobility
Only a few short weeks ago I was walking with him to the park with my boys. He was slow and needed support but he appeared to enjoy it. Now he is days away from needing a wheelchair according to Mum. For 20 years or more he walked every weekend in the Peak District. This only stopped a couple of years ago. It's so f***ing cruel. Excuse my language.
Apologies for rambling. I have so much to be thankful for. My lovely wife and wonderful kids have been very supportive. My Mum and Dad could be so much worse off too. Where they live is not short of organisations and individuals who can offer support and I'm very grateful to all those who have helped my folks.
I hope everyone has a great weekend and that, whatever your circumstances, there are moments of peace, humour and love at some point. I realise that sounds a bit cheesy but that's all I've got.

 

[pahaps]

I've just been checking out some Teepa Snow videos on YouTube. These were recommended by a thoughtful individual on the forum. I'm impressed with her dynamic style and I'm already picking up ideas about how to approach tricky situations next time I care for Dad.
Does Teepa have a UK equivalent? Not because I don't like her my American friends but just so I can gain even more understanding.

 

[pahaps]

A lot of my Dad's delusions of late seem centred around boats and flooding.
Last night he was talking about rescuing children on my brother's canal boat. My brother doesn't have a canal boat I should say.
While he was visiting recently I talked about an incredible incident that actually did happen to Dad about 30 years ago. He was on a yacht that was wrecked in a storm in the Bay of Biscay. He related the details of this traumatic time for him very slowly and minutely as I listened with my kids in awe. I knew a lot of the story but he filled in lots of gaps. He and his friends was rescued by a larger boat and taken to Santiago de Compostela in Northern Spain. He also talked about a Portuguese fishing boat with a dog that swim to them in the middle of the storm.
Have I opened a can of worms and raised many negative feelings by talking with Dad about this upsetting but adventurous time in his life?

 

[pahaps]

Obviously I'm talking to myself on this thread. Ha ha.
Just off the phone to Mum. Very worrying as Dad was attacking her with cushions and footstools and various other items. Neighbours intervened and my brother was called to help her. He was calmer when I spoke to him but very delusional. Lots of talk about looking after animals (he volunteered on an urban farm for many years). I hope Mum had a good night with him.

 

[Tattoo Lane]

Hi again - no you're not talking to yourself but I've only just logged in! Glad you like Teepa Snow - she's amazing, and her information is valid whether we are in the UK or the USA. I have watched ( I think ) all of her videos more than once, as I feel that the more I watch them and listen, the more information I pick up. I think your Dads delusions about water and boats are just that - I don't think we can ever trace where they come from, but I may be wrong on that score. Please don't beat yourself up that you caused them!I should just watch the Teepa Snow video on dealing with delusions and go with that!
From my understanding people are not making the delusions up but they are misremembering stuff that may have happened to them in the past - so sort of confusion kicking in.

I'm so pleased that at last your Mum is getting some good support from the Community nurses etc - about time too!Sorry I'm not much use - and by the way, what lovely posts tonight from you - I'm sure everyone dealing with any kind of dementia, for however many hours each day , is amazing - I take my hat off to everyone and send good wishes too xxxx

 

[sleepless]

Obviously I'm talking to myself on this thread. Ha ha.
Just off the phone to Mum. Very worrying as Dad was attacking her with cushions and footstools and various other items. Neighbours intervened and my brother was called to help her. He was calmer when I spoke to him but very delusional. Lots of talk about looking after animals (he volunteered on an urban farm for many years). I hope Mum had a good night with him.

This is very disturbing. Your mum could be hurt. Does she have a safe haven in the home where she can lock the door and phone for help? It probably seems surreal to you that your dad would harm your mum, but if the violence escalates it could happen.
I would suggest that your mum ought to inform either GP or Community Mental Health Team of his behaviour as soon as possible.
In emergency she must call 999 and tell the operator that he has dementia - the police are usually understanding and should treat the situation sympathetically. But she mustn't be left at risk.

 

[pahaps]

Thank you sleepless. I am obviously very concerned and any advice is gratefully received. I have talked to Mum about the way she might deal with Dad's behaviour including some of your suggestions.

 

[pahaps]

Just off the phone to Mum to check what kind of night she has had with Dad. He was restless but not aggressive which is a relief of sorts. Carers come each morning to help him shower and dress and all sounds calm for the moment.
The most upsetting part of our conversation was the acknowledgement of how quickly Dad is deteriorating. He barely opens his eyes (we've been told this is linked to Parkinsons?!), is having trouble feeding himself, can hardly walk, etc. Despite Mum having a relatively decent amount of support, Dad's condition seems to be racing ahead with Mum constantly adapting to new situations as best she can.
Dad comatose in a wheelchair is an image I don't like at all.

 

[pahaps]

Spoke to Mum and Dad on the phone a few minutes ago. She sounds tired. Dad was wandering about their flat but she got him to the phone and we had a chat of sorts. It is increasingly difficult to communicate on the phone with him. He becomes very distracted, misunderstands what I say and is becoming belligerent even about the simplest questions or statements. I tried to suggest that he perhaps would like to sit and listen to some music or sit on the balcony to enjoy the sunshine. He was confused about both of these and as he became cross I steered the conversation elsewhere.
He still calls me by name mostly but I think he is becoming less and less sure who I am. Completely understandable given he can't see me. Referring to my Mum as 'mum' or her name also is often met with silence as he becomes uncertain even who she is. When he visited recently he asked why I was calling him 'dad' and I knew that this was a significant event. Telling him I was his son was horrible.
I hope this evening is good for them both. My brother is with them tomorrow and this will mean my Mum gets a break.

 

[Tattoo Lane]

Spoke to Mum and Dad on the phone a few minutes ago. She sounds tired. Dad was wandering about their flat but she got him to the phone and we had a chat of sorts. It is increasingly difficult to communicate on the phone with him. He becomes very distracted, misunderstands what I say and is becoming belligerent even about the simplest questions or statements. I tried to suggest that he perhaps would like to sit and listen to some music or sit on the balcony to enjoy the sunshine. He was confused about both of these and as he became cross I steered the conversation elsewhere.
He still calls me by name mostly but I think he is becoming less and less sure who I am. Completely understandable given he can't see me. Referring to my Mum as 'mum' or her name also is often met with silence as he becomes uncertain even who she is. When he visited recently he asked why I was calling him 'dad' and I knew that this was a significant event. Telling him I was his son was horrible.
I hope this evening is good for them both. My brother is with them tomorrow and this will mean my Mum gets a break.

Oh pahaps, this is horrible for you all. Can't help any, but sending hugs to you xxxxxx

 

[pahaps]

Thanks TL. Means a lot to me that even one person is reading my ramblings.

 

[HillyBilly]

Hi pahaps - I didn't log on to TP yesterday so only just caught up with your rollercoaster ride!

I hope your Mum is OK. Does she have any "outside" support or help? And I don't mean just the practical stuff (grab rails etc) - but any way she can get "time off"?

Talking face to face is so much easier than when on the phone - I expect your Dad was simply unable to "imagine" the scenarios you were suggesting to him. Had you been there in person, you could have put the music on, led him to the balcony etc. It's so hard isn't it this rollercoaster ride?!

 

[Tattoo Lane]

Always ready to read Scouse ramblings - so much more fun than any other part of the country ramblings, apart from HillyBilly who absolutely cracks me up!
I just had Mum on the phone and was trying to explain about online shopping - was that stupid of me? (Don't answer that!)She said that she could do it herself , but as she thinks a mobile phone is "the internet", has no idea what broadband means, and has no pc, laptop or phone access and wouldn't know what to do with it if she had it, it became a rather odd conversation. I tried to explain how it all worked, in small words, and said I'd do it but would need her debit card details. Apparently she doesn't have a debit card. "Yes you do Mum, it's with Nationwide, a blue card with a long number on it". So off she trotted to get her purse and prove me wrong ( again, as I'm never right and she always is - we think that's about her feeling silly when she messes up bless her - a sort of defensive response - but nevertheless infuriating at times)) Nope, found it "Oh I thought you meant the OTHER card (??????)" Explained that I could shop remotely for her and the shopping would be brought probably the next day to her house..... Long pause " Ooooh that's a good idea isn't it?" AAAAARRRRRRGGGGGHHH yes it IS a good idea, which is why I've spent hours over the last few weeks trying to persuade her ........
It doesn't get easier does it? And I think we're only in the fairly early stages of it all ............................. Sending hugs and hope I've made you smile xxxxxxxxxxxxx

 

[pahaps]

You're not wrong there HillyBilly! Distance and family/work commitments mean I can't just pop 'round. Very frustrating and worrying.
Yes, my Mum does have a fair amount of support which is increasing all the time. This mainly comes from my brother who lives near. We have fallen out and this complicates matters to say the least. I know the answer is that two grown men should just get on and make up but it's not that simple.
Mum also lives yards from the GP who is supportive and with whom I have established contact as part of POA. The Community Matron visited this week and is in the process of increasing the level of support. My folks live in an apartment complex which also includes a dedicated unit for dementia sufferers. They don't live in that part but have assistance from some of the staff for washing Dad daily and potentially providing night time care. There are also lovely neighbours who are happy to take Dad for a walk or assist my Mum with shopping, chores and so on. The staff at the on-site bistro and hairdresser's also keep an eye on Mum and provide a space for her to share the load. While things could always be better, they're certainly not isolated and alone.

 

[pahaps]

TL, you've deffo made me smile. What a rigmarole. It puts all my worries into perspective. Your Mum sounds like a delightful lady even if she drives you mad. God bless her.

 

[Tattoo Lane]

That's good to know pahaps

 

[Tattoo Lane]

TL, you've deffo made me smile. What a rigmarole. It puts all my worries into perspective. Your Mum sounds like a delightful lady even if she drives you mad. God bless her.

She really is one sweetheart - but at times she drives me potty! She's so independent - makes me feel ashamed of myself! However sometimes she's far too independent for her own good. Isn't it good to know we can come here and have a bit of a rant? Does me the world of good

 

[pahaps]

Me too. I'm having a good day with the kids, the sun's shining and I have some stuff to do later to prep for work tomorrow. I know there must be loads of people on here having really shi**y days but I think it's important to communicate even if we are being light-hearted sometimes.

 

[Tattoo Lane]

Laughs - so that's why you asked me THE question huh?? Sneaky!!!!

 

[pahaps]

Literally every time I phone Mum there is a new and more worrying or upsetting development in Dad's illness. Today she went out for a well-earned break with friends. Just before she left - my brother stays all day on Monday amongst lots of other support - Dad was incontinent. In her words 'it was everywhere'. My brother had the unenviable task of cleaning up.
He has been incontinent in terms of urine for a while and wears pads (increasingly during the day too) but this is the first time it came out the other way. This on top of him closing his eyes virtually all the time which has only happened in a few short weeks.
While it easy to write on here, I genuinely wish I could be there for moments of crisis even if it is wiping up ****.