Hi! I’m a newbie on this forum. My brother has had PD for the last 10 years and has been reasonably independent for most of the time.
However he has started to deteriorate recently and I think he would like to move in with me and my wife.
Although I think I understand the disease, I’m uncertain about the practicalities of care and the likely way in which it will progress.
Also our house has stairs and steps within it that preclude most mobility aids.
We have a bedroom and bathroom for his sole use.
I’d be really grateful for any advice and thoughts on how we can help him
Thanks
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Hi and welcome to our friendly forum, @Westiewales , Everyone is very helpful here and will have really useful experience to share with you. They’re bound to be along soon to say hi.
Over the ten years, things have changed for your brother and I’m sorry to hear he’s deteriorated recently. This is never easy. I wish it were possible to say how things will progress for him. Everyone is different, but what’s important is to get good care and be vigilant with treatments, including medication.
He’s very lucky to have you on his side and asking the important questions. Besides what the members can add from their personal experience, you can read: Daily living equipment | Parkinson's UK and Home care and care homes | Parkinson's UK. A search on the site and on this forum should also get you some solid advice.
We’d encourage you to call our helpline on 0808 800 0303 too (Holiday hours are listed here: Helpline and Parkinson's advisers | Parkinson's UK). Our advisers will have other ideas for you.
Take care
Janice
Forum Moderation Team
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Hello Westiewales and welcome to the forum.
The question you ask is on the surface a very sensible one, but as Janice P has indicated not at all easy to answer. The only certainty about Parkinson’s as things stand at present ie there is no cure, is that the will progress and people who have it will deteriorate. What is not known is how any individual’s needs may change, how fast (or slow) that may happen and how can you plan for this essentially unknown future.
The answer in short, is with great difficulty. I have a few thoughts however that you may wish to consider or at least know about, which may help. So in no particular order.
Your brother is entitled to an assessment of his needs by an occupational therapist who works for Adult Care Services at your local council and I think it may be worth considering this. You may not need to do anything immediately but he/she would be able to give you an indication of how adaptable your property is, should this be needed. The means tested Dkisabled Facilities Grant is used by many to pay for some or all of the works depending on your financial situation.
You specifically mentioned steps/stairs within your property. First don’t assume in the short to medium term tnat these will be problematic for your brother - many people with Parkinson’s can manage steps/stairs even if their walking is not brilliant but most people do assume these will be a problem.
There are alternatives to what you called ‘most mobility aids’ by which I am assuming you are also including stairlifts which is most people’s first thought. If space allows a through floor lift might be an option or ground floor facilities - both of which can be recommended by the occupational therapist.
There are any number of small items of equipment that can help with all sorts of things so always ask if you notice your brother struggling with ‘everyday things’
At some point he may benefit from a rise/recline chair to help him get from sit to standing and many local authorities will supply these where there is an assessed need. If you are purchasing privately I would always recommend going to a specialist show room where you can try a few different ones - in particular compare a standard chair with a tilt in space - the latter is more expensive but where there is balance issues it brings the person more fully to their feet without the ‘tipping point’ of standard chairs.
I realise that this is information that you may not need at the moment or indeed need at all, but there is no harm in being aware of the sorts of things you may need to consider at some point. Obviously I don’t know your house so can only make general comment
Of arguably more importance I think is giving serious thought to how things will change if your brother moves in and if this is a realistic and workable option however much it is your instinct to help. It will change the home dynamic considerably and will affect all of you, possibly in different ways. I personally think it is important that you have some conversations about how you each see it working, the expectations you each have. even possibly setting some ground rules. In particular I think you need to consider how you manage your brother’s care as his needs increase. Are you and/or your wife going to be his carers. People often take on this role and in the early days it’s not too demanding but as time goes on it can be relentless, exhausting and challenging in ways you could never imagine and not everyone is cut out to be a carer. Of course you don’t have to take on the carer’s role for ever and a day; if it becomes too much there are alternatives.
I hope I haven’t put you off or made it sound like it is unworkable, that was not my intention; nonetheless it is a huge decision and I think you all need to be as honest as you can be at this stage about your expectations. Please remember I can only make general comment based on very little information and not knowing any of you but if nothing else maybe it’s given you food for thought. If anything is unclear please ask and I will do my best to clarify.
Tot
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Thanks Tot. Your reply is really helpful and has surfaced some of the issues that I had not fully considered. If he does move in we’ll certainly be having his needs assessed.
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Hi Janice
Thanks for the welcome and the advice. I’ll certainly be calling the helpline. I also agree with the point about being vigilant about medication - something I’ve already noticed.
I’ve no doubt that I’ll be a regular user/contributor to this forum!
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Hello Westiewales
I am glad my reply was of some use. I was actually going to post a PS as I have since thought of something else that your brother should consider doing whether or not he moves in with you, if he has not done so, and that is set up Powers of Attorney. It will make if far easier to manage his afffairs, should he not be able to do so, if it is already in place and can give an opportunity for you to know what he wants and be able to carry out his wishes. I would also strongly advise he makes a Will
Tot
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