Help, suggestions - anyone?

[FlipFlops4Me]

My DH is a stroke victim who developed vascular dementia. He is now at a fairly advanced stage (although only diagnosed for a year or so). He needs help toileting, dressing, eating, washing etc. All of this is fine.

The problem comes at night when he babbles incoherently for literally hours on end. In the past three days and nights I've had roughly two hours of sleep per night.

Anyone got any ideas? However oddball, I'll try it. I'm chuffing desperate and how he survived last night is thanks entirely to (a) my dog and (b) talking books playing loudly enough to drown him out.

I use the Kylie pads for his single bed and they are brilliant, a life saver.
Can I ask about washable men's incontinence pants max capacity. I am using 8 drop pants as his output at night can be quite a lot and some nights use 2 depending on his bed time and they cost £1.25 each unless I can get a deal on Amazon and I haven't seen any washable ones which have a decent review. Would be grateful if you would let me know what they are please.

@Carpediem15 - we use these:

https://www.amazon.co.uk/gp/product/B07SHHWCZV/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

They work best if they hug the bottom and bits - if they're baggy they don't work nearly as well. I find one pair lasts about six months and we use them for night wear. Those combined with the waterproof backed drawsheet (wonderful old fashioned idea) and single duvets I cut the washing right down.

They aren't a cheap initial purchase but given how long they last they're worth it.

I have a call back coming from the doctor today, thank goodness. Last night was the worst yet - 15 hours of fairly loud incoherent babble starting from about 5.00 p.m. I got up at 8.00 a.m. and he's not slept at all as far as I can tell. He's going to be dreadfully ill if this continues. I got about 2 hours in 10 minute blocs. He just kept on getting out of bed.

The doctor has to come up with some drugs - even if just medium term while we get some melatonin, or other help.

I have a Type 1 diabetes review coming up - it's going to be a really bad one because I simply don't get the time for relevant self care.

I hope the GP can help.

It would help for future planning if you started a diary of each day and night - behaviour, diet, mood. You will have something concrete to refer to when you speak with adult social services. No sleep for you is not sustainable, either partic as you have your own health worries [hug]

GP came through with very short term night sedatives, plus the number for Adult Social Care. I spoke with several different departments and am now in line for a Continuous Care Review (him), review of my needs and I am hoping for a carer who can come during the day once or twice a week for a few hours so I can nip off and sleep!

I have the private respite carer who we both really like but she doesn't stay long and costs a fortune. I'd rather put that money to paying local authority social care if that let me sleep.

Also an assessment might reveal something needed in his care and maybe guide me so that this behaviour pattern stops.

Now that is a very good idea! Thank you. I'll set up a worksheet and if I need to take it to the GP or anything I can just print it out.

That's good news, hope everything works out well. Thanks for link to the pants.

I have an actual social worker! She's arranging emergency carer cover to start with, and she'll try and get me a carer three times a week for 5 hours a time, so I can nip next door to my neighbour's spare room and kip!

How wonderful!

I work night shifts with the elderly and find night time talking can be turned into sleeping after a plate of snacks. Can have a soporific effect in the early hours.

Bless you! One hefty plate of yummy snacks will be produced for a midnight feast 😄

This is great. Hope tonight is peaceful for you both.

Night was the usual babble-fest but thankfully a care worker turned up at 9. a.m. so I went next doors to sleep in their spare room until 1.0 pm When I got back DH had had breakfast, meds, shower and was having a nap.

Care worker is a young man, very pleasant, very anxious to be helpful and friendly. He tells me not to come home until 2.00 p.m. as that is when his hours finish.

He's back tomorrow!!!!

This is the most help I have ever had, and I am so incredibly grateful. It's given my DH a lot of things to think about - a new person in our lives - and he's never experienced actual physical care giving by anyone other than me so it's very valuable.

I am so very thankful to my GP and to the Adult Social Worker who sorted all this out in the space of 3 hours. Amazing woman.

My word... what a speedy care package into place. That is so good to hear. Make the most of it OP. Rest up. Hugs.

Have you dealt with dementia? Harrowing it is.

Good. I'm so glad it's working well for you both. I work in a residential dementia unit and can't imagine living with someone who is advancing with the disease.

Today the carer reports a couple of hours of incoherent babbling and wandering during the morning. (After 12 hours of it during the evening/night). This is very worrying but I am not in touch with any dementia nurses etc. I must ask the GP to give me a phone number or something. Maybe I could revert to the diagnostic team? Although their letter specifically stated they weren't to be involved in ongoing care.

It's all so confusing.

That wasn’t really terribly helpful. Surely this board is for people to ask for advice, which is what the OP was doing on behalf of herself and her husband.

Great news, well done!

It is confusing. My mum was assessed by the memory team, who sent a referral to the psychiatrist then closed her case. The silly psychiatrist assured mum there was nothing wrong with her, so after struggling on for a bit I went back to the GP and asked for a re referral To the memory clinic, who reassessed her and have referred her to the (new, apparently very good) psychiatrist. If you have a good GP they should be able to put you in touch with the right people. It is tough …

My social worker (never, ever thought I'd need one but oh I'm glad she's there) has put care in place three mornings a week. She's also written to our GP to say that she wants him to arrange a further assessment of DH's condition, and to initiate further investigations into the cause of the (literally) constant UTI that DH has had for three months. He's had seven courses of antibiotics, a scan in hospital and a visit to a consultant urologist. All he got were more antibiotics. Like she said it's hard to know if he's in late stage dementia or suffering from the effects of the UTI.

If it's late stage dementia (and he fits all of the criteria except incontinence) then I'm probably going to need more help later on as he deteriorates. Also I might need to swap out our kingsize bed for a couple of singles.

Thanks for all your support guys - I've had my epilepsy meds increased, and I think my blood pressure meds will need to increase. Most worrying is the type 1 diabetes which takes a lot of self care which I don't really have time for any more. Still, if two out of the three health problems get dealt with I'll be able to keep going.

Have a look into Continuing Healthcare (CHC) as your DH may be eligible. It isn’t means tested and support is based on an assessment of need. There may also be an Admiral Nurse in your area, who will support both you and DH. Your GP should be able to direct you to them or contact Dementia UK who can advise. Sorry if you already know all that but if not, hopefully it’s a bit helpful.

Well this is a bugger. He's so exhausted he's babbling during the day now. I don't think he got a minute's sleep last night although he is napping now (it'll be brief). The GP prescribed some anti anxiety meds for a few days but they have made no difference whatsoever.

When not babbling he's asking me to end his life because he doesn't want a carer, he only wants me. I said that's tough, 'cos he either has a carer three mornings a week or he kills me off completely because I can't take care of him for 24/7 awake hours.

I am now seriously considering care, for the very first time and that really depresses me.