Typical procedures towards residential care...

[rogkru]

Hi all,

I'm encouraged to see all the people on this TP forum, and so I'd like to ask some advice.

My Dad (age 77) has Alzheimers and is currently on a range of medication. He appears to be on the maximum dosage of Reminy XL.

Reminy XL - (Galantamine) 24mg (alzheimers)
http://www.drugs.com/mtm/reminyl.html
http://www.netdoctor.co.uk/medicines/100004421.html

My Mum (age 73) is doing a truly marvellous job coping with Dad's behaviour, but I feel it necessary to start preparing the family for whatever lies ahead for caring during the years ahead.

Would there be any value in changing to Aricept? The doctor at the hospital recommends against it, as the current range of medications my Dad is on cause no side-effects, whereas any move to Aricept may cause problems or make him sick? Notwithstanding that, I'm also wary about him going off one drug and onto another due to the gap of time in-between meds when his condition may accelerate more rapidly?

I'm certainly not trying to second-guess the NHS, but if its just a matter of funding I really don't mind covering that. I'm sure I can find a way to finance it and pay it later in my life. My primary goal is to try and make my Mum's life a little easier.

I don't think my dad is going to be interested in any day-care scheme, even though the doctor at NHS said she would get a man to call my Mum and discuss. I think right now she is putting some hopes on this call if and when it comes... it would be great from Mum's point-of-view I can see.

So, my question is what should I be investigating for Dad's Residential care (if and when it comes to this?). Is there some groundwork for me to carry out beforehand? Even though my Mum may be against the idea now, I'd like the option to be ready if she cannot cope any more.

Is there anything I can do by contacting the local Alzheimer's Society? Maybe there are factsheets detailing all these questions I have - since it all must be a well-travelled path. Is there a NHS and or private-care decision to be made here for example? How do I make this sort of choice?

I appreciate your time in reading this. Thank you.

Regards,


Roger

 

[Grannie G]

Hello Roger

Reading your post makes me think of someone who feels helpless in a no-win situation, and is desperate to do something constructive.

Are you unhappy with the effect of Reminyl on your father`s condition? If not, there`s little sense in changing to Aricept. But there`s no way I or anyone else on Talking Point {TP] can advise on this issue as we are not medically rained to do so.

My husband had adverse reactions to both Aricept and Reminyl and even though there is some difference in the drugs, his side effects were identical.

If your mother has hopes of day care, I feel you should do all you can to support her. Your mother may not want to see your father in residential care, but day care may give her a bit of a break to help her just to recharge her batteries.

For your own satisfaction do as much research as you can. It can do no harm.

But there`s no saying how long your father may take to reach any significant stage, so this makes planning ahead very difficult. Perhaps it would be better to live for the day and help your mother through her present difficulties.

Take care xx

 

[Skye]

Hi Roger, welcome to TP.

I don't think there's any point in changing from Reminyl to Aricept. The drugs are very similar in effect, and the only reason to change from one to another is if one produces unpleasant side-effects. Cost isn't an issue, there's not much difference, though I believe that Reminyl is marginally dearer. My husband was on Reminyl for seven years, and did very well on it.

The only other possibility is Ebixa. This is a drug for late-stage dementia, to be taken in conjunction with the other drugs. NICE have said it shouldn't be prescribed, as it's not cost-effective, but you might find your mum's consultant willing to prescribe it if you are forceful.

This factsheet describes the drugs.

http://www.alzheimers.org.uk/factsheet/407

I wouldn't write off day centres, there are good ones and bad ones, but if you can find a good one, where there are stimulating activities, your dad might enjoy it. You would need to talk to social services about that.

Regarding nursing homes, you'll find a list in yellow pages. Many have websites, and you can check the latest reports on the SCSI website. But the best way is to go and look at them yourself, talk to staff, residents and families, and go by your gut feeling.

These factsheets will give you some pointers.

http://www.alzheimers.org.uk/factsheet/476
http://www.alzheimers.org.uk/factsheet/451

 

[Margaret W]

Hi Roger,

I can't advise on the drugs, I have limited experience, and only of Aricept, which seems fine for my mother. As regards thinking about a care home, well, I laughingly said I should have joined a local church and visited homes to provide prayers and communion, to get to know them before mum needed one, just to see the inside situation. Just a thought.

Best wishes

Margaret

 

[germain]

Hello Roger,

Our Mum has gone now but sis and I , with the enormous benefit of hindsight, were talking about an "if only" list

It would go something like this

if only

we'd investigated and visited all the care homes in the area a couple of times well in advance and visited them with Mum for coffee/lunch etc

we'd read up on our local authorities funding policies so that we knew exactly what charges we would be facing

we had investigated benefits - it was only after advice from Margaret W ( TP member ) that we got a £3,000 + refund of council tax.

we'd registered the LPA earlier

we'd contacted the ocupational therapists earlier for catalogues of aids etc

we'd contacted the Continence service to take away the tons of products we stored in our garage !

we'd investigated local care agencies and their staff earlier (we got brilliant carers but more by luck than judgement)

we'd sourced a chiropodist who did home visits - ditto
hairdresser

we'd totally changed Mums clothes so that they were all easy wash, tumble dry, non -iron - you wouldn't believe the washing that even minor incontinence brings - and as for the C.Diff. infection well enough said !

I know it sounds a lot and some sound more minor than others but we did face so many emergency situations because our planning hadn't been enough. It was almost "well it won't happen to us" but it did and we weren't as ready as we could have been so the family stress was enormous.


Hope this helps

regards
germain

ps - investigate different day centres - some are bit more "coffee club for gents" than others

 

[Grannie G]

Thank you Germain

What an excellent `tick list`. It could only have come from one who knows.
Love xx

 

[Quack]

Planning ahead

Hi

I totally agree with the 'wish list'. There's no harm in planning ahead. We found that our preferred homes etc have a waiting list and being on it does give you a chance when you feel the time is right for that option.

I would also recommend getting in touch with your local AZ society. They can provide advice and support on a more local level for your parents especially your mother.

Good luck

Quack