Setting up a new home in a PD friendly way


#1

Hello there
We are in the process of buying a bungalow which is going to be our ‘forever home’.
We are planning to put a Wet Room in as getting in and out of the bath is difficult for us both.
My husband was diagnosed with YOPD in February at the age of 52 after several years of sympotms and is responding well to the medication. He does have a mobility issue at the minute which we are being told is not connected to the PD but he’s still undergoing tests to get to the bottom of it all.
I’m hoping and praying that we do get answers but we’re running out of specialists to look at him.
I’m looking ahead to the future and wondering whether anyone can give us any practical tips for our new home that we can put in place now whilst we’re reasonably fit and able and before it becomes a crisis. Any ideas at all for any rooms will be gratefully accepted. Thank you


#2

The bathroom and kitchen (depending on how much your husband will be using it) are arguably the most important. A wet room is an excellent idea, it is something I have done myself and has made all the difference. Make sure you get someone who knows what they are doing because if the gradient is not right you can have all sorts of problems. What I also did at the same time was install an electronic toilet seat that incorporates a bidet function, which I use far more than I expected to. Mine happens to be a toilet seat but you can get bidet/wc units which can be used as a standard toilet. I also had my wash hand basin set at 900mm rather than the standard 800mm because I was tending to stoop and with it being a bit higher my posture is better. Whilst planning your wet room give consideration to how assistance may be given to your husband should he need it. For instance, I could be assisted to be stripped washed at the basin if necessary and I have had the shower placed at the side rather than back wall with extra long hose so a carer could reach and manage the controls if needed. I also opted for a freestanding seat rather than wall mounted so that I can position it as I need. You may need to look at worktop heights and access to cupboards etc in the kitchen, and carousels in corner cupboards and pull down inserts in wall units can make the contents more accessible- i am actually about to have my kitchen refitted and have opted for deep drawer units as I find these easier to manage than cupboards. I know you are not asking about furniture but height and depth of chairs can make the difference in being able to sit down and get up - to find the optimum height, wearing usual shoes or slippers, measure from the back of the knee to the floor and this should be the height of your chair when sitting on it with cushion depressed; personally I would add an inch/25mm as it alters the right angle enough to help the start of the transfer process. If the chair seat is deep or sloping shuffle forward first towards the edge of the chair and use a chair with arms. If you are thinking of getting a rise/recline chair I would strongly suggest you consider a tilt in space type - they are more expensive but bring you to your feet more safely as the chair moves on an axis and you don’t get such a marked tipping point, risk. Generally the advice is to remove loose mats as they can be a tripping hazard. Try not to have too many obstacles for eg I don’t have a coffee table so that I have a clear area to cross the room, instead I have a couple of small folding side tables they are actually garden tables, that are ideal for putting by your seat for your coffee cup. I hope some of this is helpful but if you have any specific questions please ask.


#3

Forgot to say heights are crucial most standard wcs are too low at 16 inches you can get higher ones, my own is 19 inches and that makes a lot of difference. The height of a standard wc can easily be increased by using a raised toilet seat use the above measuring method to identify which height RTS is needed.


#4

I should also have said and my apologies but I am cognitively a bit slower than I used to be, but do try not to worry too much. If your husband is managing well at the moment there is only so much you can do to plan ahead, Parkinson’s is very individual. If you have given thought to the bathroom and kitchen and are aware of the importance of heights and potential trip hazards in general


#5

Sorry it zipped off before I had finished as I was saying if you are aware of those sorts of things in general you will have made a good start. Many of the issues that may develop later can quite often be solved with quite minor changes or equipment. If you are stuck you can always come back to the forum and someone will be able to point you in the right direction I am sure. So try not to worry and my apologies for the bitty response to your post, I do hope at least some of it has been helpful.


#6

Thank you VERY much Tot for taking the time to respond, your fabulous suggestions and kind words.
I’m trying so hard not to worry but this is all still quite new to us and I’m desperate to ensure that our new home will be safe and practical from the beginning so that I can tick that worry off in my mind and focus on living our lives.
Hopefully in the near future I’ll be able to change my ‘forum name’ from ‘Worried Wife’ to ‘Calm and Positive Wife’ but sadly at the moment this name sums me up.
I really like the idea of getting a higher toilet and sink and I’ve never seen an electronic toilet seat so will definitely look that up. And the toilet / bidet is definitely worth a look too. Is there a particular make that you feel is better, safer, stronger etc ?
I understand about mats being a trip hazard but what do you think is the best flooring option ? Carpet or wooden ? I know that walking can become more of an issue in the future. I’m thinking that carpet may be safer as it won’t be slippery but I’ll be grateful for your thoughts on this if possible.
Your furniture advice is great too. We’re not planning to buy any furniture right away as we’ll have to spend our money on the big things first but I’ll certainly bear this in mind when we need to replace our current furniture.
Once again Tot, thank you SO much for your suggestions, They really have been useful. We’re so looking forward to moving into our new bungalow and because of your help we’ll have it set up from the beginning and it’ll be a few less things for me to worry about in the future.


#7

I am glad you found it helpful, I am not sure how much I can give product names out so will check and get back to you with a bit more detail however first thing to remember is that the bungalow will be your home and whilst I understand you want to keep your husband safe and easy for him to manage, you are looking to minimise risk, it is not possible to totally eradicate all risk. So with regard to your home all my suggestions and things I have put into practise myself are with the aim of simplifying whatever is giving you problem for eg having a chair of the correct height and depth and using the correct techniques means getting up and sitting down ard not only safer but use less energy, that energy can then be used on something else. To give you a real life eg recently when my phone rings my feet stick and I miss the call, not a major problem but irritating. After quite a bit of searching I came across a landline phone which came with an SOS pendant with which I can answer calls from wherever I am in my flat and I have found in my garden and neighbour’s flat upstairs too, I kid you not. Its made all the difference. Next issue was the pendant got in the way so a bit of lateral thinking and i bought a mobile phone bag which can be worn cross body. See what I mean. There are likely to be more 'small issues’like that than major ones if the main rooms are sorted, the trick or skill depending on your point of view is how you approach it. I tend to treat each new ‘thing’ as a challenge and try out different things until I find something that suits because one of things you will get used to is that some point things will need tweaking, it is the nature of the condition. I will get back to you when I have checked what info I can give in the meantime, and i will tell you more about my own experiences but re flooring another option could be vinyl. Will get back to you asap


#8

I really appreciate your advice on this. You seem to have it all sorted but I expect as you say, things change and so you have to think of new ways of dealing with things.
The suggestion of a bag to keep the phone in will certainly be useful for my husband in the future but in the meantime I will look at getting one for my elderly Mother as this would make her life easier.
I’m so pleased I joined this forum. It’s funny how issues seem so big until someone gives a little advice. We’re definitely going to get the bathroom done and I suppose I should wait until we get there and find ways to fix things as and when they occur.
Thanks again Tot


#9

Hello, me again, do please say if you want me to shut up, but little things keep occurring to me, for instance did you know that some building adaptations, if for a disabled person, are zero rated for VAT as are some goods and services - that is potentially quite a big saving on your wet room. Also they, whoever they are, do suggest you should live in your property for some months before changing things so you have a clear picture of how you use each room, and again it is something worth thinking about. Don’t know about having things sorted, but I did work for many years in the field of disability, which has proved to be most helpful since developing PD myself. If I might make a general observation and hope I am not speaking out of turn, but it is not hard to understand why you describe yourself as Worried Wife and are at the moment quite daunted by it all. Truth is you will probably always worry up to a point, it is not easy to watch someone you care about struggle. You and your husband will find ways that suit you and whilst I am not suggesting for one minute it’s always a bundle of laughs, there is a lot of comedy to be found too. Please do remember though that whilst your husband may look awkward when doing some things or is slow or whatever that doesn’t mean he shouldn’t be ‘allowed’ to have a go and will get there in the end. Your well intentioned instinct will often be to take over and do for him, but if you take everything away, figuratively speaking, what are you leaving him with? I am glad you are finding the forum helpful but would encourage you to look at it and the Parkinson’s UK website more widely, I firmly believe that information is key in helping to regain some control over your life and the situation you and your husband find yourselves in and it won’t feel quite so overwhelming as it does at present. Do you actually have a date for moving yet? It is a very exciting time even with the challenges it brings!


#10

Hello again Tot
No, I certainly don’t want you to shut up. I’m just delighted that you’re willing to share your knowledge and experience to help others like ourselves. You’re definitely giving me lots to think about.
Your work experience really must be invaluable to you now that you’ve found yourself in this position. I’m a Support Worker but my experience is more community based than in a person’s home so I have an understanding of some of the challenges people with disabilities face but no real experience of what’s available for homes and very little knowledge or experience of PD (my husbands parents developed it late in life and ended up in a care home). Also, most of my experience is in the Learning Disability Field but I guess I’ve probably gained skills that may come in handy in the future.
One of the biggest parts of my job is to promote independence so it’s funny you should mention this. Since my husband was diagnosed in February I’m ashamed to say that I did start to behave like a Mother Hen towards him. Thankfully I realised what I was doing about a month ago and am now making a HUGE effort to change my behavior. It’s bizarre that I’ve spent so many years promoting independence of those I support in my work life and have been doing the exact opposite with my Hubby.
Thankfully we can still laugh but we are also having quite a stressful time at the minute.
We seem to have to fight for every appointment, and then the waiting is stressful, and then having to wait for results etc. I’m sure you’ve all been through similar things. He just wants to know what’s wrong with his knee / leg and why he’s losing his mobility. And none of the specialists can tell him.
The PD is well controlled with the medication and his biggest PD related issues are slowness, rigidity, fatigue etc. So he’s having to get up much earlier to get ready for work. He’s struggling at work too but needs to remain in employment for his own sanity and self esteem. I would love him to go part time and have made it clear to him that we’ll manage if he ever wants to do that but I don’t want to push him on this as he has to make these decisions as and when he’s ready.
I expect that most people go through a period of being worried / stressed / angry / upset etc etc in the beginning and finally settle into acceptance and learning how to cope / adapt etc.
We’ve sold our house and had our offer accepted on the bungalow. It’s now in the hands of the Solicitors, so goodness knows when it’ll all go through. Hopefully it should be around September and hopefully not before then as I’m having an operation on my shoulder in August and will be out of action for a little while. We’re a right pair… him with his gammy leg and me with my gammy shoulder. Moving house should be interesting.
Thanks again Tot


#11

Please check messages.


#12

Hi Worriedwife
My wife and I have moved to a bungalow a year ago, as I have PD. I am still reasonably mobile but we have decided to have the bathroom and kitchen future proofed as you suggest.
We have completed the bathroom refit. We agree with Tot’s tips. Comments on this:

We have had a “comfort height” WC fitted- a bit higher than normal
We have removed the bath and had a shower enclosure fitted, 120cm x 80cm, big enough to take a free-standing shower seat if and when needed, with the shower tray set low so there is no step.
The shower is remote control, so could be operated by a carer
Shower has a wide access door (70cm)
We have low-slip vinyl flooring
We have 2 grab rails in the shower and one combined grab rail / toilet roll holder- so there is always something to hold on to particularly when turning
LED ceiling down-lights so no need to change bulbs
Bathroom door widened to 30 inches
We did get a VAT refund on most of the parts. See https://www.gov.uk/guidance/vat-relief-on-certain-building-work-if-you-have-a-disability
The kitchen is next on our agenda!


#13

My husband had an electric body dryer installed in the shower. Very noisy but he thinks it’s wonderful.


#14

Hello Brianrawnsley

Thank you VERY much for the tips. Widening the bathroom door isn’t something I’d thought about but makes good sense. I’m thinking of getting a sliding bathroom door or one that opens outwards as the bathroom isn’t terribly big. The toilet is a definite. I really like the idea of the shower being remote control. And I’m hoping that we can add the grab rails at a later date but I’ll ask the bathroom fitter about that. I’m a little confused about the lightbulbs though. Why wouldn’t they need to be changed ?
Thanks again for the tips. They’re really helpful


#15

Hello Katharine1
Thank you SO much for taking the time to reply. I’ve never heard of a body dryer and will certainly look into this.


#16

Don’t know much about them but body dryers are a good idea and worth looking into personally i use cotton towelling robes, bought a few inexpensive ones, they stay in place unlike rowels and are like blotting paper so drying isn’t a problem esp if you get the longer length. It also is easy to sit and take a breather if needed while the robe goes on ‘blotting’ it works for me. A friend uses a hairdryer but I haven’t tried that myself!
Door widening can be useful but what you really need to look at is the turning circle how much room there is to manoeuvre- where space is tight door widening can increase the turning circle - not only in the bathroom but is a factor in getting in to and out of the bathroom and any other room come to that. Extra space may be needed for a variety of reasons eg walking aids or physical assistance.


#17

Further to recent posts about setting up a PD friendly house or environment, I have just refitted my kitchen and share what I did that you might like to think about if looking at your own kitchens. Please note this is what suited me I am not saying they will be for everyone rather it is food for thought. My balance is most stable in the mid range I therefore had my worktops set 2" higher than standard so that the bottom of cupboards etc was a little higher and fherefore easier to access the contents, an unexpected but useful extra is that it is a comfortable resting height if needed as the worktop is just the right height to rest elbows and forearms. My main storage are deep drawer units as I find these easier than cupboards, two corner units have carousels that spin rather than open out with the door all of which have helped enormously. I opted for an induction hob mainly on safety grounds and have an oven and microwave set at mid height in a tower, I also now have a dishwasher and my undercounter appliances swapped for a fridge freezer with fridge at the top. I opted not to have wall units as even with pull downs i found them awkward. The units have soft closures and drawers cannot be accidentally pulled right out. Hugely successful for me and hope some useful bits for others.


#18

I’m worried now. I decided to move nearer my daughter back in November before I knew I had PD. I was diagnosed in March around the time I found a property to buy. I was actually looking for a bungalow but the ones for sale at that time were either too expensive or needed too much work. I also wanted 3 bedrooms and many only have two as my daughter who lives up North often visits.

I’m worried now that I won’t be able to stay here for long and it’s so expensive to move again. I think I will be ok with the stairs for a while, fingers crossed.

It’s taken nearly 6 months to get this far and I still don’t have a moving in date.


#19

Hello Margs, First thing I would say to you is to take one step at a time. Moving is recognised to be one of the most stressful things you can do, not only that you should be able to enjoy your new home once you move in. To start worrying now whether it will do you long term is, to be frank, a waste of energy although I can entirely understand your concerns when your future like mine, is to say the least somewhat uncertain. If, as and when you start to have problems - and that could be some time in the future - there are many ways by which you will be able to remain in your property from small pieces of equipment to bigger adaptations like wet rooms. If you are worried about the financial side of things the smaller items do vary depending on your local council but these are not hugely expensive by and large. Bigger works like wet rooms will be eligible for a disabled facilities grant (DFG) which is means tested and depending on your circumstances you may or may not need to pay a contribution. I suggest you have a look at the website for your local authority for arrangements in your area. I hope this is a bit helpful and reduces your concerns a little but please do post again if you need clarification. There is nothing wrong with planning ahead but at a time and pace that’s right for you and I think at the moment just concentrate on the move and settle into your new home. There will be time enough to think of the future later and in all probability you will be able to adapt your property if so needed and be able to stay there if that is your wish. Let us know how you get on.


#20

Thank you so much Tot, I will try to follow your advise.