Sending to a day centre

[tigerqueen]

My OH is now in the moderate stage of AD, and I have given up work to care for him but as I am only 58 I still need some stimulation as I miss the cut and thrust of work.

I had hoped that I might be able to do some volunteer work for the CAB or have a part time job, but since being at home these last few months I now realise this is not really possible as I can't commit to the regularity this would require without employing someone to be with him, which is not a possibility. I intend to do some distance learning and have also joined the Alzheimers research network, so although I won't have the social stimulation, at least I can still have mental stimulation. That's assuming of course that he lets me get on with it without constant interruptions.

I am lucky that I can still leave him for a couple of hours, which enables me to meet friends and attend monthly Alzheimer's group meetings.

We have a shared birdwatching hobby and have always worked together in the garden, but both of these are now hardwork dealing with his frustration as his ability declines, but we will continue as they are the only thing that still interests him. However, he'll only do them with me ( I think he is embarrassed by his lack of ability now), and when indoors is constantly looking for reassurance and never gives me any peace if I leave the room. I find the lack of personal space really wearisome.

I have started introducing him to other activities that he wouldn't normally do like musicals and singing for the brain, which he appears to enjoy even though he moans about going. Obviously I also have to go to these with him, so I expect some of his enjoyment is because I am with him. I want to get him to a day centre at some time in the future which I know he will be resistant to, as I need to have some time at home when I can just get on with things. I thought I'd start taking him to some other Alzheimer's groups such as the memory group and then may be introduce him to a day centre as another club. I don't want to leave it too late when it is not possible to introduce something new to him, but equally I'm really not sure whether he will go at all as he still has a view on what he does and doesn't want to do.

I would love to hear how others have coped with this.

 

[chick1962]

Hello Tigerqueen, our situations sound similar. I am 53 next month and also had to give up my job to care for my husband. I know how frustrating it is for my OH but to keep him stimulated is important . He is 5 years into his mixed dementia and apart from the nights ( he does not sleep much) he can still manage to do a bit of gardening ( but slower) , he still drives ( tested once a year) and generally copes with the day today stuff. We went to a day care centre but seeing ppl much more advanced with the disease upset him greatly so I won't go again for the time being. It's such a fine line. Word finding is difficult sometimes, so is mobility as he has got other health issues. I try and concentrate on the here and now and on the things he can still do rather then what he can't . In winter he does painting my numbers, we play the Wii it's a laugh, or he plays cards. In summer we try to go out a lot , along the beach or meet up with friends and family . We have crossroads here and they introduced a carer for 3 hours a week who takes OH out and it gives me time to go swimming or to the gym maybe they have them in our area too?! Xxx


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[Jinx]

Tigerqueen, our situation is a bit different I am 64 my husband is going to be 83 on Sunday. I am still managing to work full time, from home plus visits to clients, HO etc. My husband needs 24/7 supervision, he is liable to wander but is also very unsteady on his feet, not a good combination. Before we moved he went to a lovely day care centre which catered for all sorts of abilities some with early to mid dementia but not all. OH had a nice group of men who looked after him and welcomed him like a long lost friend. He moaned about going but once there was fine. That was run by the local council and needed a referral from SS.

The day care provided here is for people with much more severe dementia and greater needs than OH, and I couldn't bear to subject him to that. However, Age Concern run a centre here that caters for the elderly (over 60's) including those with early/mid dementia. They run all sorts of activities from crafts, painting etc to computers. We have to pay but it's very reasonable and they pick him up give him lunch and bring him home so it gives me several hours twice a week. It caters for people over 60. I don't know if other areas have this.

Have you had a carers assessment? I get direct payments from SS so that I can buy in agency care if I need to be away, or want to go out. As I have said elsewhere I know I am lucky as my OH is very tolerant of carers, thank goodness, he just doesn't like being on his own, and of course can't be left alone anyway.


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[marionq]

Like Jinx my husband attends a LA mixed centre and I find the people who go there are very welcoming. They all greet him cheerfully on the bus and give me a summary of whatever has been going on at the centre on the way back. Although John has little memory of his day he is quite happy to go and accepting of the idea of a respite place.

For the last three years we have been attending all the Alzheimers groups we can eg football memories, singing, walking groups, allotments etc. I think this has helped to accustom him to groups of people with assorted problems. In addition I have felt supported by really excellent staff at Alzheimers Scotland.

 

[Izzy]

Like Jinx my husband attends a LA mixed centre and I find the people who go there are very welcoming. They all greet him cheerfully on the bus and give me a summary of whatever has been going on at the centre on the way back. Although John has little memory of his day he is quite happy to go and accepting of the idea of a respite place.

For the last three years we have been attending all the Alzheimers groups we can eg football memories, singing, walking groups, allotments etc. I think this has helped to accustom him to groups of people with assorted problems. In addition I have felt supported by really excellent staff at Alzheimers Scotland.

My experience is very like Marion's.

I am 64 and my husband will be 85 in October. He was diagnosed with Alzheimer's in 2001. He has had excellent support from our local Alzheimer Scotland. He attends their day centre one day a week. He has no memory of what he does there but is happy to go. As his needs have changed from the early stages to a more advanced stage he has moved from activities designed for those with more capacity to those for people who have more advanced dementia. He still goes to groups with people who are at different stages of dementia but I go with him to support him now.

 

[Beate]

A good day centre is like a lottery win. OH goes Monday to Friday and loves it. They do so many projects with him, and they stick him in a pinny at lunchtime and let him serve the drinks. He's still very mobile but doesn't speak much anymore. Arts and craft are his favourites but he also does jigsaws, armchair exercise and gardening etc. I don't know what I'd do without them.

 

[Kjn]

My dad goes to a club on a Friday , age UK one, 4 hrs every week mum drops him off they make cakes, do clay work, painting, flower arranging, painting , all sorts, they get a 3 course meal and he loves it. It's a dementia related one so everyone's the same and he enjoys doing things. Mum gets time to herself then as they don't have any sitters or carers help.
My mum and dad also attend singing for the brain , a monthly coffee morning and an art group every week.
I hope you can find something suitable for him .

 

[tigerqueen]

Thanks everyone, very helpful.

I haven't had a carers assessment yet, but am starting to think I should consider it now. I've always felt a bit of a fraud, as most of the time (apart from when I was working) I can cope with my OH's needs. If I could get some funding to help towards the day centre that I would like to send him to it would be good, as I'm pretty sure it's going to be very expensive.

I'll definitely look into the day centre situation. I have one in mind that probably has a waiting list, so I need to make contact soon I think. I can then visit it and check out the other things you have suggested like making sure it has plenty of activities, and can cater for his needs both now and later.

 

[Spamar]

In this area we can take Alzheimer's patients to the Alzheimer's meetings. They are whisked away ( not really) for their own activities while the rest of us chat and so on.

 

[tre]

My husband goes to day care and as he is now at an advanced stage I think I would struggle to cope without this. He cannot be left alone at all and needs a quiet environment so I rush around doing all the stuff which would agitate him whilst he is away at day care.
We are self funding so I pay the day care charges which are in this area around £50 per day, from 10.00 am until 3.00pm, plus an extra charge for the transport there and back and a meal and drinks which is another £10 or so. The agency costs for someone to sit with him in our home, which they currently charge at their cheapest "companionship" rate is currently £16.50 per hour, so compared to this the day care is a bargain.
However, there is a lot of pressure for places and you cannot in our daycare just ring up and ask to be put on a waiting list. You need to get the LA social worker involved and then, if they recommend it as appropriate you might get a place. I have no idea as to whether this is how it works everywhere but I was a bit concerned that you seemed to think you could just ask to go on the waiting list your self.
I had a carers assessment mid March when the SW recommended an extra day at day care for my husband but even with this we only got the extra day two weeks ago. This was not because the waiting list was that long but just the length of time it took to get it implemented by the SW. The day care told me in mid May they had space for his extra day but were waiting for the paperwork.
I am not trying to put you offlooking at day care but just to warn you it does take time so it might be best to get an assessment sooner rather than later. Hopefully your LA may be more efficient than ours.
Good luck.
Tre

 

[marionq]

Tre, places are at a premium here too. If social services recommend that a person goes on the waiting list and make a referral usually after contact from a GP or similar then the costs are £15 per day plus cost of lunch approx £4.00.

If you want a private place eg with Alzheimer's Scotland or other private provider then costs can be up to £60 per day. I believe you can arrange this yourself without a referral.

With a referral these too can subsidised and cost £15 per day.

Day centres, respite places and good quality care homes are essential to prevent carer breakdown.

 

[Beate]

Bloomin' heck - our day centre cost £3.40 a day and the sitting service is free!

 

[marionq]

You are in Tower Hamlets Beate which is a heavily subsidised area because of deprivation. I have noticed the same in similar areas. More facilities at lower prices to offset social problems.

 

[Beate]

Hm - moral of the story: don't live somewhere affluent?

 

[tigerqueen]

Lots here I hadn't considered so will need to get researching and making contact with the agencies involved. I think the day centre I am interested in is a private concern so, I might be able to self refer. But whatever, at least all your answers have given me a starting place.

TP is great for sharing information as well as support.

Thanks everyone.

 

[Aragorn]

Lots here I hadn't considered so will need to get researching and making contact with the agencies involved. I think the day centre I am interested in is a private concern so, I might be able to self refer. But whatever, at least all your answers have given me a starting place.

TP is great for sharing information as well as support.

Thanks everyone.

I would endorse lots of the comments here. My OH has catastrophic memory loss but is still lively and sociable, so a day centre is a good place to maintain that as long as possible. Best to start early - also with Carer's Assessment for yourself. Get these things in place now so that you can turn up the heat later when needed and don't find yourself in crisis management. There are several day centres around us £25 for one and £16 for the other, both with lunch included, both self-referral, although the AS centre does an assessment and has a six-week trial period. Important to match the centre to your OH's level.

Good luck

 

[Lindy50]

Hm - moral of the story: don't live somewhere affluent?

Well, to be frank that has been my experience, Beate - and more to the point, don't live somewhere affluent unless you too are comfortably off. Getting any kind of help around here is like pulling teeth x

 

[chick1962]

Well, to be frank that has been my experience, Beate - and more to the point, don't live somewhere affluent unless you too are comfortably off. Getting any kind of help around here is like pulling teeth x

I know what you mean Lindy50 as its the same here xx


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[pamann]

My hubby went to day care centre, arranged by SS l had to pay £45.50 for 6hrs, it did include lunch, he would not eat any or have a drink, he was to busy trying to get out of locked doors, never went again

 

[Casbow]

Day care

My OH is now in the moderate stage of AD, and I have given up work to care for him but as I am only 58 I still need some stimulation as I miss the cut and thrust of work.

I had hoped that I might be able to do some volunteer work for the CAB or have a part time job, but since being at home these last few months I now realise this is not really possible as I can't commit to the regularity this would require without employing someone to be with him, which is not a possibility. I intend to do some distance learning and have also joined the Alzheimers research network, so although I won't have the social stimulation, at least I can still have mental stimulation. That's assuming of course that he lets me get on with it without constant interruptions.

I am lucky that I can still leave him for a couple of hours, which enables me to meet friends and attend monthly Alzheimer's group meetings.

We have a shared birdwatching hobby and have always worked together in the garden, but both of these are now hardwork dealing with his frustration as his ability declines, but we will continue as they are the only thing that still interests him. However, he'll only do them with me ( I think he is embarrassed by his lack of ability now), and when indoors is constantly looking for reassurance and never gives me any peace if I leave the room. I find the lack of personal space really wearisome.

I have started introducing him to other activities that he wouldn't normally do like musicals and singing for the brain, which he appears to enjoy even though he moans about going. Obviously I also have to go to these with him, so I expect some of his enjoyment is because I am with him. I want to get him to a day centre at some time in the future which I know he will be resistant to, as I need to have some time at home when I can just get on with things. I thought I'd start taking him to some other Alzheimer's groups such as the memory group and then may be introduce him to a day centre as another club. I don't want to leave it too late when it is not possible to introduce something new to him, but equally I'm really not sure whether he will go at all as he still has a view on what he does and doesn't want to do.

I would love to hear how others have coped with this.

Please make enquiries now, for day care. I left it to late and my husband cannot be left in day care. He will not sit down or even take his coat off. Just paces about and two care places said they can't have him as he is disruptive.Sorry have to go. Good luck.