Stuck in limbo!

[Linbrusco]

Thats what it feels like.
Mum 74 with moderate Alzheimers and Dad 77 with cognitive impairment.
If the dementia journey wasn't enough, it's even harder having a Dad who has a hard time understanding it all. He has no coping skills or strategies, despite being given information, and having had a few visits from our Alzheimers Key Worker.

Mum & Dad live next to us, so yesterday before I went to work, I went to check on them, and Dad looked absolutely awful, and he was shaking his head.
Mum had her Alzheimers activity group that morning, and she gets quite anxious getting ready.
Wheres her bag,wheres her glasses, wheres her shoes, what if it rains, will she still be picked up, am I going to work, are my children at school, checking her calendar a dozen times which she can no longer make sense of.
Dad said he would be fine as soon as Mum left, plus he had his weekly visit to his club to go to.

I truly beleive before long Dad will have a heart attack or stroke. He's already on blood pressure tablets and taken up smoking again.
They seriously need some time apart, and Mum can no longer stay at my sisters ( fell getting in the bath last time). My sister won't consider respite as she does not beleive Mum is at a bad enough stage... mum would not go willingly... And then Mum is not bad enough that she would be assesed as needing residential care.

As said stuck in limbo

 

[Kjn]

Oh how difficult, I don't know what to say , could sister even take mum out for day to give you some space or is she further away?
X

 

[MissDiane]

Sorry to hear you are so worried about your dad, and your mum of course. I am in a very similar situation to yourself so can relate to your concerns. All I can suggest is explore all avenues with regard to getting dad a break. Try Age UK for a sitting in service for mum, so dad can go out or potter without worry. We have a lovely lady from the Alzheimers society who takes mum out, do they offer this service near you? Could they afford to employ a carer to take dad out, agencies such as Homeinstead provide these services. Fortunately I have Lasting Power of Attorney for mum so when things get bad I can enforce respite or daycare for mum even if she refuses. She has to accept these things or her only option will be to go into care which she doesn't want. My sister won't acknowledge how bad things are, that's another story. Make sure your Dad has a carer's assessment, they can help with getting breaks for dad, even give him a grant perhaps for something he enjoys to give him a break. Hope some of my suggestions are of help.

 

[MeganCat]

You are a bit stuck aren't you?! Would your dad stay with you and your sister stay with your mum at her house to give your dad a short break (appreciate its an upheaval for your dad) that way your sister might get a little more insight into what your dad is coping with and may reconsider the respite issue. After all the purpose of respite is to allow the carer to recharge enough to continue caring. I hope you manage to sort something out.

 

[Linbrusco]

I live in New Zealand so Age UK is a bit far away
Mum does go to an Alzheimers Activity Group 3 x a week for 2 hrs.
On the days I don't work I take Mum out.

I have checked out other Day care programmes for Mum.
One I took her to, she said the pople that were there all had things wrong with them and some of them were of their head so she wouldn't go again, plus she said they made her scared
Our Alzheimers Key Worker has offered Dad to go to a mens Carer Support Group to which he said No, because he doesn't want to see anyone he knows.
Unfortunately apart from his club once a week he is pretty much a homebody, and has been like this for years.
Its the time between me going over at 7.30 pm to do Mums medication and 10 am, which is the worst for Dad. Also on the weekend when she has no group to go I take Mum out as much as I can, but then I have my children and husband to consider.
My husband has Neurological issues due to surgery and treatment for a brain tumour, and we have a small 3 brdm house so no room for Mum or Dad to stay. In any case Mum would not stay at home with my sister the night knowing that Dad is just over at ours.

My sister has had Mum & Dad several times to stay, over the past few years, but a few weeks back when they stayed and Mum fell getting into the bath, I think this has put paid to that with Mum being out of familiar surroundings.
Sister has admitted the pair of them are hard work
Dad could stay at my sisters, but I would have to take unpaid time off work to stay permanently with Mum.
Couldn't do that financially.

 

[Essie]

Hi Linbrusco you're at a really difficult point (not sure there are any easy points with AZ....) but more intervention looks like the next step whether your sister agrees or not - I think you do have to sit her down and say either she takes Mum for a week to give your Dad a break or it will have to be respite care - her choice - I'm afraid I often think that 'denial' is just an easy route to avoid getting too involved - consciously or unconsciously.

This is a link to AZ NZ page of services available in the Auckland area - http://www.alzheimers.org.nz/auckland/useful-links and this is a link to the government website page on respite for those aged 65+ http://www.healthpoint.co.nz/public...s-needs-assessment-and-service-co-ordination/ and this is a link to a company offering respite care at home - http://www.respitecareauckland.co.nz/ perhaps your Dad could stay with your sister for the week and Mum stay at home with live in care?

They are temporary measures only though - perhaps it is time for something more permanent to be looked at, at least, before the worst does happen with your Dad?

Good luck

 

[fizzie]

This is a long shot really but could you get someone to do an overnight with your Mum for one night a week so that your dad could stay with you or your sister....just to give him a break and a good night's sleep? I know that kind of live in care sleepover arrangement isn't cheap but just one nights break could help your dad's stress levels perhaps