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
2 Likes
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
1 Like
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
1 Like
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.
1 Like
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!
1 Like
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
2 Likes
Hi all, abit of an update and a couple of questions - hoping someone can provide some advice.
My brother’s been with us now for 7 months. Mostly plain sailing except for a couple of issues: trying to keep him on track with the timing of medications is proving difficult. he has a pill box with a day’s prescriptions in it which plays an alarm a few minutes before his pills are due. Sometimes he ignores it, sometimes he takes the wrong pill, sometimes he gets it right!
He was told on Monday by his nurse that he’s in the complex phase of his illness. Tbh I think he knew but hearing it confirmed professionally has hit him hard. He needs to talk through what this means to him with someone who is able to give him advice and help him process his emotions. I’d be grateful for any thoughts on this.
thanks for taking the time to read this
Hello Westiwales
I was very sorry to read that your brother has taken the news that he is now complex care in Parkinson’s terms so badly and I can entirely understand why this should be so.
Whilst I accept labels have their place, I have long thought that to the individual to whom they are applied, they can have the potential to do much damage - as your brother’s reaction has proved.
For me personally, and I repeat this is only my own view of looking at it, I take little notice of labels that are applied to me, including that for quite a long time now my medical team have classed me as advanced Parkinson’s or complex care needs. That may well be true in medical terms but it is definitely not how I see myself. My philosophy is actually quite simple - I am Tot and I happen to have Parkinson’s. That’s it. I don’t describe myself as disabled, the challenges that Parkinson’s throws my way lead me to look at ways to reduce their impact and so on. So how do I manage that you may well be asking, I will do my best to explain because it is both simple and complex at one and the same time.
For me living with Parkinson’s or indeed any chronic condition means recognising that the main conflict lies not in what you can physically or mentally do or not do or accepting the latest label my medical team applies, it’s about that extraordinary part of the body that carries such power and influence - your brain. When you get news like your brother did your brain can rapidly turn that into something big and ugly, something you can’t possibly beat. However if you think about it logically what’s changed for him - nothing but being given the label of complex needs. He can still do the same things he did 2, 3, days, a week before he was given this news and he will be able to do so tomorrow and the next day. Of course in time there will be changes but change doesn’t happen just because you were told you were complex care. And change as and when it happens, doesn’t care whether you are called complex care or that you have advanced Parkinson’s, and when that change happens you just get on and do what you have to do.
I’m not sure how helpful this will be to you in helping your brother but perhaps you can get something from it - finding ways to change your mindset to turn negative into positive and reduce the impact of that loud bossy and domineering voice in your brain that is hard to ignore for the other side of the fence which actually makes logical sense, can give you the strength to go on.
That said, perhaps he would manage better by talking to someone uninvolved and his GP could make a referral for counselling or similar if he is interested’
Hope this help a bit
Tot
Hey Tot
Thanks for your insights and help. That is exactly what I’ve been saying to him. he seeing his GP this afternoon so I’ll ask him to raise the counselling issue then.
Let me know how he gets on. You may want to show him what I have written as I have Parkinson’s just as he does so he may perhaps take it on board a bit. In December it will be 15 years since I was diagnosed I am and doing very well thank you despite how my medical team choose to describe me. I’m not suggesting it’s easy but worth the effort being positive and enjoying what you can do sure beats being miserable and agonising over what you can no longer do that’s how I see it anyway.
Tot
Hi all, it’s been a while! Just a question if I may….
To recap, my brother has had PD for nearly 13 years. For the last year and a half he’s been living with us and we are his primary carers.
He is in the complex phase of the illness and on the maximum doses of all his meds. In the last couple of weeks there’s been quite a deterioration in his condition. Some of it is down to constipation which has been resolved. However, his meds don’t seem to be effective across the periods between doses. He’ll be ok for a couple of hours and then increasingly shaky and sleepy.
The GPs here have no experience of PD and ringing 111 just gets the suggestion to contact his GP! I’m really struggling to know what’s going on with him and don’t really know what to do to help him.
Any thoughts or advice gratefully received
Hello Westie … I’d suggest ringing the helpline here & talking to one of the excellent Parkinson’s nurse’s. I have phoned a few times over the past 15 months.
Tel 0808 800 0303
You might also contact PCN care.
Best wishes
Steve2
Thanks, that’s good advice. I’ll ring them tomorrow
Best of luck. Do let us know how you get on.
They have always got back to me within 24 hours.
Best wishes
Steve2