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Hi everyone - Carers UK Forum

Hi everyone

Tell us a bit about yourself here.
Hi everyone, I'm new to the forum.
I joined because my wife and I have recently moved my wife's father into our home. He has the early stages of dementia, some days are harder for him than others, but we know his condition will worsen over time.
He has also lost some mobility through old age and we're currently looking at ways to adapt the home for him - we want him to be as comfortable as possible in our home, which we know will be a challenge for him at times with it being a less familiar home and with his condition worsening.
If anyone has been through a similar experience I'd love to hear what efforts in adaptation have been worth the time etc. I'm know every situation is different though.
Anyway just introducing myself to the forum, I'm sure you'll see my around asking questions!
Will he be living with you 'en famille' - ie, eating with you, living with you as 'one of the family the whole time', or will he have separate 'quarters', a bedroom, an adjoining/linked sitting room, and his own bathroom (all presumably downstairs)? Will you and/or your wife spend all day with him, and the evenings too, and all the weekends? Do you have children living with you (still)?

I say this because having a very elderly person with dementia with you 24x7 always in 'your' space is a daunting prospect! It will be, or become, very probably, like an elderly 'toddler' who becomes completely dependent on you not just for the physical care (feeding, laundry, hygiene etc) but for 'entertainment' as well. Sadly, with dementia, it's all too common for those afflicted to be unable to be in their own company as they simply don't know what to do with themselves! They require 'direction' and get very bored, very easily, become restless and wander round the house 'looking for something to do' - they may turn switches on an off (my friend's elderly father with dementia routinely turns the heating on and off, the oven on and off, tries to turn the burglar alarm on and off - he's succeeded twice! - and also does 'helpful' things like 'sorting' the mail (it ends up in a drawer in the kitchen!) and taking all the downstairs loo rolls upstairs.... and so on and son on)(he's the nicest man, but.....).

Do you plan to have professional care workers in to help you/your wife? Especially with things like bathing! (The very elderly can become very ,very resistant to bathing, as it seems 'unnecessary' to them, and represents an activity that is uncomfortable and cold!) . Most of all in order to give you/your wife a break from caring.

What are you going to do about your own leisure time? Can your FIL be left in the house alone, or is he a danger to himself (luckily, my friend's dad CAN be left on his own - which is great, though she often gets back from shopping etc to find the heating's off again!). What about when you want to have a holiday, or visit friends and family, or go out for the evening, etc etc etc.

Fundamentally, I would say all this sums up as 'expect caring for the elderly with dementia to be as limiting as when your kids were babies and toddlers!'

PS - have you got everything sorted financially, about Power of Attorney etc, for when he loses mental capacity (don't forget he won't be able to make a will or changes to it once he's deemed to have lost capacity!)

PPS - I'm not deliberately trying to be 'depressing' but it's essential to understand what is likely to happen, and how you will cope with it. There will, of course, be an upside as well - knowing your FIL is being taken into his family to be cared for, and having his company.
Hi Grant and welcome,
It's a long hard road you and your wife have set foot on. It's going to get bad. However, glad you've joined the forum. You can ask and you can moan and you can share experiences and we all do our best to support and encourage each other.
One essential NH person to get on board asap is the Occupational Therapist. This magical being should come visit your home and assess dad's mobility needs. Revised as they increase. This should produce, 'on loan', any number of aids. Grab rails, shower seat, walking aids, slide sheet, (for moving him in bed), commode, raised toilet seat, wheelchair, standing aid, hoists, hospital bed and so on. Don't buy anything until you have seen them and then not until you have asked for the equipment. Some things have to be contributed to if Dad has enough cash. Wet room, ramp etc.
Secondly, (Or perhaps first as they will rouse out the OT) get in Social Services and ask for a Needs assessment for Dad and a Carer's assessment for yourselves. This will produce a Care Plan. The Care Plan details when and for how long a carer should come in to help Dad. Do NOT dismiss this idea thinking you and your lady will manage it all. Not just yet, but one day maybe soon, you will be desperate for someone to help get Dad up or put him to bed, to wash and dress him, shave him and perhaps just sit with him or get him a meal. Or were you both planning to stay with him 24 hours a day? Every day. For years perhaps. SS will suggest a Means test on Dad's finances. Bear in mind that YOU do NOT have to pay for any of dad's care. It's all on his own financial situation. Magic number is £23,250,00. If he has over that in savings or assets then he has to pay.
Thirdly. Go onto the Dementia websites where you will find all sorts of ideas on how to use colour, memory aids etc to help dad find things in the house and manage to help himself for as long as possible.
Fourthly do your research into your Local Council, what is their policy relating to your situation, into the local area, what day centres, charities, volunteers operate in your area. (Library for example). You WILL need all the help you can get as time goes by.
And fifthly? Keep posting and don't be afraid to ask, this has been a very brief 'what to do' list.
Welcome to the forum. The others have given lots of good advice. I'd just like to ask
How old is Dad?
Where was he living before he moved in with you? Own house, or rented?
Is he making a substantial contribution to the household income?
Do you have a dishwasher and washer dryer or tumble dryer?
Is he in receipt of Attendance Allowance?
Hi Grant, welcome to the Forum, I hope you find it as useful as i have over the past few years.

I've been caring for my Mum (now 91)full time for the past 5 years or so(since her dementia diagnosis) , although she has been living with us for around 10yrs (the first five in the USA). It's not been easy at times but at the moment we feel it is the right place for her to be.

These are some of the things that have worked for us
1. Having their own space, We are lucky that our current house already had a downstairs bedroom with en suite suitable for Mum, we then converted our dining room into a sitting room for her, furnished with some of her old furniture and lots of family photos and bits and pieces she wanted around her. It's a place that feels familiar and safe for her, where she can watch what she wants on TV, listen to her favourite music in her favourite chair. She even has her meals in there. I can sit with her if she needs me to, but able to have my own space too.

2. Respite, It is important that you get some regular time off from you're caring role, to recharge your batteries so to speak. I have a carer come in for day once a week (around 6 hrs) she helps mum get up, makes her lunch and generally keeps her company. I can go for a walk, do a bit of shopping or have lunch with a friend, whatever i fancy. Also on one Saturday a month so Hubby and I can have some quality time together. Twice a year Mum goes into a local care home for a weeks respite so that Hubs and can have a week away. This was the hardest thing to put into place, as most places do not have dedicated respite beds that than be booked more than a couple of weeks in advance.( Impractical if you work and can't take time off on a moment's notice!) Thankfully we did find a lovely place we can book well in advance, and Mum is well cared for while we enjoy some much needed R&R.

3. Benefits, do contact your local social services to have both a needs assessment for Dad and a carers assessment for yourselves, they can help you work out what benefits you may be entitled too, inform you of and even supply aids for your dad around the house, and tell you of other agencies that may be able to help you in you're caring role

4.Doctors, let your Dads GP know that you are his carer, especially if it a different GP to yourself. Find out who is your Dads "dedicated GP" (anyone over 65 now has to have one) It won't necessarily be the doctor he sees but will oversee his records. Having a good relationship with Mum's GP surgery(different from mine) has been really
important in our case

Hope this is helpful and everything goes smoothly for you, good luck !
Hi all,

thank you so much for all the advice. It's been a great help for us as we have felt somewhat lost in trying to make sure we do what's best for him.

Up to now we haven't given him his own part of the house. He has is own bedroom downstairs and exclusive use of our downstairs bathroom/wetroom. Because he's quite compos mentis a lot of the time, we wanted him to feel welcomed as though he's joining us in the home rather than here because he can't look after himself. However, I can really see the benefit of giving him a bit more space to call his own, with his own pictures and furniture and choice of TV channels. I think we will move towards that asap; I think it would help him feel comfortable as time goes on.

We're lucky in that my wife works from home, so is always around to look out for him. Most of the time he doesn't cause himself any problems, but I know my wife is reassured that the she can be there to calm him down when he's confused, listen to his stories, and stop him on the odd times he does flick the wrong switch etc - even when its not dangerous, this can lead to distress on his part when he doesn't understand what's happened.

But I agree we should look at getting a carer in at least one day a week to start with - I'd hate for caring for her father to take a toll on my wife. I know this is something we'll have to look into more and more as time goes on.

Thank you also for the suggestion of dementia websites. These have provided a lot of useful info further to what you guys have suggested. Thank you!
Do you have anyone in to do the housework? Sometimes, it's more "acceptable" for the carer to have someone to help her (who is also able to care) rather than to have someone specifically to help dad himself. Maybe someone to hoover round, do the bathroom and kitchen once a week, that sort of thing. Then dad gets used to having someone else around.
One more suggestion, which may prove more of a problem than a blessing. If dad is sleeping downstairs and his bathroom is downstairs, you might want to consider a baby alarm in his bedroom and possibly in the bathroom too. That way, if he becomes distressed during the night or has a fall, for example in the bathroom in the middle of the night, there is a good chance you will be alerted quickly. Of course in future you may find dad calling out to you a number of times during the night, just like a small child. You'll have to consider you options again should that happen. (Something to help him sleep?)
Your wife will find that working from home becomes more and more difficult as time goes by. Dad will disrupt a lot because he won't understand what she's doing or that he is indeed interrupting. Time to up the care when that happens and for your wife to make sure she is out of sight - upstairs perhaps.
As for 'taking a toll' on your wife, or indeed yourself. Inevitable I'm afraid. Goes with the territory as they say.
I would definitely recommend having care-workers involved right from the off! That way it will be 'normal' for your FIL to have someone other than his daughter/you to look after him. Sadly, dementia will probably make him a lot more 'clingy' as time goes by, and it's essential that he can be 'content' with someone other than his family!

Also, please set up respite time right from the off, again, as part of his 'new normal'. One thing that might well work is having a care-worker stay over in the house, looking after him, while you and your wife have time away. My friend (no husband) does this with her FIL, and it works pretty well.

Alternatively, when you and your wife are 'off on holiday', say for a week, then you can present residential respite care as 'his holiday' - after all, a residential care home is very much a 'hotel for the elderly'. Hopefully it will be possible for him to come with you 'en famille' for weekends away maybe? (One other possibility, if you are holidaying in the UK, is to book respite at a care home where you are on holiday!).

I agree that working from home may well get trickier as the dementia takes its horrible grip - just as it's tricky to work from home when looking after a baby/toddler!

So much depends on the personality of your FIL, and his relationship with his daughter, and whether his own wife used to 'wait on him hand and foot' etc etc. There'll be a lot of trial and error, I should think ,but I would definitely say that the most important thing is to ensure that professionals are involvd in his care right from the start. I did my poor MIL no service at all by having her stay with me for up to 5 weeks at a time, with me exclusively to look after her - so when she had to go into care, it was very hard for her, as I'd got her used to living at what I had swiftly come to call Hotel Jenny, where each and every day was spent in my company, and I dedicated my days completely to looking after her and entertaining her.....