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.

[Carpediem15]

Sorry to hear this - I have had it for months, sometimes a couple of nights a week then others, like yours, which will go on for 3 or 4 nights. Singing, clapping, make weird noises, shouting and talking rubbish drives me mad until I get him up at 7. 30. Get him sorted and fed and then he goes back to sleep and I am left wide awake.
I have put head phones on and watched something on the tablet on youtube but now I put the big TV on and watch catchup and he ignores it. I can't read or do anything which takes any concerntration. I did go into the bedroom next door but he was shouting for help for ages so had to give that up.
Not read of any solutions to this except for maybe a few large glasses of wine (if only) 🙂

[FlipFlops4Me]

Glad to know that moving into the spare room won't help me because I was thinking of doing that. It would have been a lot of work so if its not going to work anyway, I'll not bother.

I might buy better earbuds. I do spend a fair bit of time on Youtube but Audible is my go-to at the moment.

You got any idea how long this stage of dementia (whichever stage it is) lasts?

I'm thinking of phoning the GP and saying either gimme the drugs for him, or you'll be finding me a jail space.....

[Carpediem15]

I think you GP would be the best way to go ---- NHS . Melatonin might help improve sleep and reduce sundowning in people with dementia. Provide proper light. Bright light therapy in the evening can lessen sleep-wake cycle disturbances in people with dementia. Adequate lighting at night also can reduce agitation that can happen when surroundings are dark......
Leaving a small light on seems to help some nights but it depends what mood he has been in during the day. I read so much about it but nowhere does it say how long it will last, hope you can get something sorted. My friend has been trying to get Melatonin prescribed for her husband but think it has to be done by a Consultant not a GP but that is where she started.

[HappyHamsters]

Poor man, contact his gp or dementia nurse for advice, he can't help it and it's worse for him and if this bothers you so much now how will you cope in the future. Maybe he has an infection, in pain or distress.

[FlipFlops4Me]

@HappyHamsters I know he can't bloody help it. I wouldn't by word or deed show him the effect the exhaustion is having on me. He's had a full physical two weeks ago, his last dentist visit was last week and to the best of my knowledge there is no other physical cause. Good god you come over as a sanctimonious wotsit!

[Carpediem15]

@HappyHamsters

Poor man, contact his gp or dementia nurse for advice, he can't help it and it's worse for him and if this bothers you so much now how will you cope in the future. Maybe he has an infection, in pain or distress.

Excuse me but have you been through this with your partner or family member?

[FlipFlops4Me]

@Carpediem15 - thank you for your helpful advice! I'll try light therapy in the evenings (I have a SAD lamp) and I'll experiment with different light levels during the night. Also I'll be ringing his GP to enquire about melatonin tomorrow morning. Thanks again.

[SerpentEndBench]

What is the plan for further down the line?

Do you have carers come in during the day to support him, and by extension, you?

[FlipFlops4Me]

I have a respite carer once a fortnight, for three or four hours. It's really all we can afford right now. (It's a private arrangement)

I was thinking of contacting Adult social services and asking what help is available although tbh he's very easy during the day, he's a honey. It's night times that are awful and I don't see anyone coming along to DH-sit for a whole night!

[SerpentEndBench]

No I understand. It might be time to ask Adult social services to do a carer's assessment for you as well as assess DH's changing needs.

Have a hug, caring for a person with dementia is HARD [hug]

[FlipFlops4Me]

@SerpentEndBench 💐

[countrygirl99]

Does he get attendance allowance? Sounds like he might be eligible for the higher rate.

[Carpediem15]

I was in touch with S Services and have been offered 3 hours a week respite paid for by local council. Didn't know anything about it until Care and Repair people told me and it is going to start in New Year. Attendance Allowance - full payment is about £17 a day and private care is more than that per hour, don't we save them a fortune.

[HappyHamsters]

@Carpediem15

Excuse me but have you been through this with your partner or family member?

Yes I have and also worked in a professional capacity for 30 years

[FlipFlops4Me]

Yeah he gets Attendance Allowance but I'll have to re-apply for him as we only get the lower rate (applied before night problems began).

I'll definitely see I can get help from the Council. Problem is,my DH really likes the current respite worker and there's no guarantee he'd like anyone else.

I think I need to speak to the Adult care team and find out what we, I or he are eligible for because I don't have a clue. This sort of crept up on us and all of a sudden I'm at the stage where I have to pay a dogwalker because I can't get out to walk the poor things!

[Carpediem15]

@HappyHamsters

Yes I have and also worked in a professional capacity for 30 years

If that is so I would not have expected the reply you made ---" Poor man, contact his gp or dementia nurse for advice, he can't help it and it's worse for him and if this bothers you so much now how will you cope in the future. Maybe he has an infection, in pain or distress"
We know they can't help it but having lived and coped with this for months and months (in my case for just over 4 years) we do understand what is happening thank you. How will we cope with it in the future - who knows, we aren't all perfect.

[PermanentTemporary]

I think talk to the GP - they may come up with something. Maybe you could suggest a referral to the older adults mental health team, if his sleep is deteriorating?

If his needs at night are increasing, you might have to look at greater levels of care perhaps.

[FlipFlops4Me]

Has anyone tried Kalms, Nytol, naughty edibles or anything else?

[FlipFlops4Me]

@PermanentTemporary

I think talk to the GP - they may come up with something. Maybe you could suggest a referral to the older adults mental health team, if his sleep is deteriorating?

If his needs at night are increasing, you might have to look at greater levels of care perhaps.

Now that's a thought. They were very on the ball at the time of diagnosis but sort of disappeared afterwards. Didn't offer any help - just a referral to the Alzheimers Society (although DH doesn't actually have Alzheimers)

[Namechange4234]

Mirtazapine or something similar to encourage rest ?

[Carpediem15]

@FlipFlops4Me

Yeah he gets Attendance Allowance but I'll have to re-apply for him as we only get the lower rate (applied before night problems began).

I'll definitely see I can get help from the Council. Problem is,my DH really likes the current respite worker and there's no guarantee he'd like anyone else.

I think I need to speak to the Adult care team and find out what we, I or he are eligible for because I don't have a clue. This sort of crept up on us and all of a sudden I'm at the stage where I have to pay a dogwalker because I can't get out to walk the poor things!

I was allowed to choose my respite person so you could try and keep the one you have now. We only got the day time AA at the beginning then re applied but you have to wait quite a while when it is awarded and I got help from Care and Repair to fill the form in to make sure it was accepted, they told me not to do it on my own incase I used the "wrong words"
My husband is also incontinent and I got a referral from my GP to the incon team to get free pads and pants although they are not the best and do buy better ones for overnight.

[FlipFlops4Me]

@Carpediem15 I'll see if there's a Care and Repair in my area. If not, there's Age Concern - I know they fill in forms. I did the form for daytime allowance on my own but I was working then and had a very businesslike head. I've been home for a while now and I seem a bit woolly round the edges sometimes. I'm putting it down to being shattered.

[FlipFlops4Me]

About inco pads - can I suggest puppy training pads? Tons cheaper and to my eye not a lot different, just for sitting on. I have washable drawsheets for the kingsize bed so that not all the bedding needs washing, and he also wears washable men's incontinence pants max capacity.

I also have two single duvets on the bed, and put matching single bedding on. That way it is soooo much quicker to change and wash.

[countrygirl99]

If he is eligible for LA funding and likes the current respite carer they may have a local authority contract or you may be able to get a personalbudget so you can contract directly. ILs had different health issues but had a mix. The 4 x a day carers were paid for directly by SS but FIL also received a weekly cash allowance fir 8 hours to cover sitting with MIL.

[PinkMimosa]

I think asking first Melatonin is a good call.

I can totally understand how it creeps up on you too. There are so many things to sort out along with the Physical Care.

Have you contacted the local Carer's Hub? We found them quite useful, mainly in supporting DFIL when he was caring for DMIL who had Vascular Dementia