should we be getting a lift before we need... - PSP Association
should we be getting a lift before we need. there is just my husband and myself
Can you please clarify Do you mean a stair lift?- Generally for a 2 storey home.
Or do you mean a hoist lift - to assist in moving your partner out of bed with?
Or am I way off track?
With either piece of equiipment, depends on where you you think your partner is at? (sometimes even with medical authority opinion it is a 'best' guess'. I tended to test my husbands mobility around how well he was able to get in and out of bed. Then I looked at how successful he was at getting dressed, moving in and out of the car, talking and then how well he was at eating and swallowing. My angle of thought - maybe different to yours? As we also had a young child in the home, and I was working fulltime when John first became unwell.
I also applied for government grants as they came up, and some take some time to come to fruition and some come rather quickly so John did receive items like a made to measure recliner chairs with 2 motors before he really needed it.
The one item John used that I found was different was a ROHO cushion.(Don't laugh like we did - a simple though 'different' cushion costs enough to make you think you should have taken on a different career!) And he found a notebook computer and some assistive software to reduce typing very useful. John also gets great use (Still!) from a shoprider/gopher he purchased some time ago though the maintenance costs are very high - as his driving skills are?
All may sound neither here nor there - but when you find out the price of things and what could or can work to make things more comfortable your priorities tend to constantly change.
Regards,
Alana - Western Australia
N.B. John's shoprider tyres cost more than my car tyres!
Alana u mention getting some funding - can I ask where u got it? We have applied for funding without success such as for the Acorn stair lift. But we have got other things like an allowance for electricity due to the Autonomic nervous system problem of feeling hot/cold. There's a form (of course) that has to be completed to get this from electricity supplier. Also I have a W A Companion card that gives me 2 tickets for the price of one ticket. Similar set up in other states of Australia. Companion card supports many events & we would have not got to some without it. I phoned Home & Committee Care & they assessed us so we get garden maintenance & transport. The Transport is very helpful taxi is booked a/c to instructions. This is with a private organisation known as 'Volunteer task force. There is a nominal fee I have been today from Highgate to Swanbourne for $8 each way. The garden service was $22.00. I am in the process of being referred to Mercy Hospital Restorative unit as I want more than a walking stick for upstairs. The OT that set up the toilet chair & shower chair would not do more without me having this assessment. This was after my neurologist found my walking & balance had declined after being on a holiday to NSW so he has set up a 2nd opinion.
Marytea13
hi CARGIVER512\\ well alana has asked the question i was going to ask in the first part mate but im thinking if its a two story house and you want to put a stair lift in it might be false economy because you might have thoughts about selling your house and going into a bungalow or low set house because your husband will probably live downjstairs anyway i have a low set house which is fine for me to get around IN \\\\ its just the garden that worries me at the moment and the maintenance which i used to do all myself but now i cannot do so much i to have psp but there are ways of getting over this i just use HOME ASSIST FOR THE MAINTENANCE SMALL STUFF AND WE GET A GARDNER IN FOR OBVIOUSLY FOR DOING THE GARDEN SO I WAS WORRIED OVER NOTHING \\ PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER REGARDS TO YOUR HUSBAND
I did alot of research regarding lifts and found that the rifton tram was the best option. ($3200.00) If we had purchased it earlier mom would have been able to stand and walk with the machine. By the time we purchased it we only used it as a lift. Of course, it all crept up quickly. In hindsight if we had had it months earlier she would have been to walk with it which would have kept the legs muscles more conditioned, the GI tract in better working order, a bit of independence being able to motor about, etc. We had to remove the frame that encases the bathroom. Other than that we have been able to use it throughout the main floor of the house. The lift we found is virtually the only lift that can be used independently by one care giver.
We also got a stair chair several years ago. This allowed mom to get to the lower level (basement) of the house where we were able to get her into the car. That lift was and continues to be used by another family member. That was $3000.00 used and was professionally installed.
I am committed to keeping her here in our home. The costs are substantial. I am glad that she is here and I am able to care for her with assistance from three other women. I can't imagine doing this on my own. This equipment is essential.
If you are thinking about lifts I would encourage to start pricing them now so you are aware of what you will need to do.
Kath
Hi, It's a difficult question to answer and i think Peter is right- it depends on your circumstances. we could not afford to move and remained in our little cotttage.We had a stair lift installed (paid for ourselves) so that Chris could continue to go upstairs to bed for as long as possible and then I converted our lounge into Chris's room. The layout of our hosue was not conducive to looking after an invalid but there are always ways around each issue. We had a hospital type bed (supplied by NHS supplies, requested by occupational therapist) and eventually an overhead hoist (supplied by NHS supplies) after I had trapped my sciatic nerve with lifting and moving Chris. I did find that being one step ahead of events helped me to cope better because we just slid into the next stage without it being marked. If you are thinking about it, it is time to get it. You need all the help you can get so go for it.
Keep asking, keep talking and you may be surprised at waht ideas are genrated and what help is available. Hopefully you live inthe UK and can tap into the NHS services.
All best wishes
teena2
We do not live in the UK. We live in the USA and I can't find any info here. Are there any books out? Our neuro gave us a piece of paper and told me to reserach the internet. We live in a single home, all on one floor, I was looking for a lift to help pick him up when he falls
The only thing I will add to the above is that given that things can take a long time to get done, it is definitely best to do it sooner than you think you will need it as it can be one of those things that comes along suddenly, through illness/infection which is enemy number one. Also it will save either of you getting injured through any sudden deterioration. It is an inevitable requirement if you are definitely going to home care. I did struggle with mum longer than I should have done and damaged my knee ligaments.
All the best
Dianne x
We installed a stair lift some occupational therapist that were here with me at that time told me it was too early but we are glad we got it. Marytea13
When my husband was diagnosed I retired a year early to look after him. I was fortunate enough to receive a pension and decided to take the biggest lump sum. We used this to convert our junk crammed garage into a wet room and small bedroom. A week before the wet room was finished, Colin fell in the bath while I was helping him shower so we were so pleased we had the work done when we did. He is still sleeping upstairs. During a visit by the OT, she asked Colin to walk upstairs as his balance was deteriorating and I was concerned he was unsafe. She said he'd be fine as long as I walked behind him. Soon after, I met a lady whose husband was diagnosed with cancer. I told her about Colin and my concerns. She said she walked behind her husband going up stairs and one day he fell, taking her down as well and breaking her back in 3 places. He died 6 weeks after diagnosis, 4 of them she spent in hospital. I ordered a stair lift that day and it is brilliant. Colin probably could still walk up, but at least I know he can now get upstairs safely. When he was first diagnosed I suggested moving as we have a steep drive at the front of the house but he became upset and said he didn't want to, we've been here since 1977. Today workmen started making our side entrance and back garden wheelchair accessible. I had a brainwave in the middle of one night . I asked a garage to bring a wheelchair adapted car here to try something out. They obliged and by backing the vehicle up the slope, putting down the ramp and wheeling Colin out, I can get him to the side entrance. We are now awaiting a new vehicle using the UK motorbility scheme. All I have to pay is £1200 and our weekly mobility allowance. We get the car for 5 years with all servicing, tax, roadside assistance etc paid for. Colin can struggle up the drive at the moment, using the handrail we put in, but one day he won't make it.
My advice, get everything you can as early as you can as long as you make sure the person with PSP still has daily exercise and has the opportunity to push themselves as much as they can, even if very limited.
Nanna B
Hi NanaB. Like you we converted our garage into a bedroom and shower/wc. Just in time, as by the time the builders left hubby was unable to use the stairs. I have a question re motability. How did you apply? Hubby gets an attendance allowance, he is 73 yrs old. Thank you for any feedback.
Take care - maddy
Hi Maddy, My hubby gets Disability Living Allowance as he was diagnosed when he was just 63, he will be 66 in August. When we asked at the garage about the vehicle, they completed the application form for us. They did say we had to be in receipt of the Disability Living Allowance. They didn't mention attendance allowance. I claimed attendance allowance when he was 65 but someone telephoned me to say as he received the DLA before 65, he would continue to get it and AA was not relevant. It seems to be an age thing. Sorry I can't help more and it seems very unfair if the car depends on the type of benefit you get. Today I received 11 pages of info from Motability, to be read before the vehicle is delivered. Their web page is Motability.co.uk This may give more info.
Best wishes.
Nanna B
Hi NannaB. Thank you for your reply. I have looked at the Motability website and it mentions DLA, not AA. However, on the Carer's website there is a note saying AA may also be considered and referred me to the Motability site ... I'm going round in circles. I will try some other avenues. Thanks again, take care, Maddy.
Hi my dad definitely needs a stairlift-currently he has to be accompanied by myself or my brother all the way up and down, otherwise he just falls backwards ( and he has done so on a few occasions ). We live in the UK, can someone tell us if we can get the stairlift free i.e funded by local authority care and rehab service, or do we have to pay for it? We wouldn't be able to afford it looking at the prices online. Have been thinking of getting one fitted for some time now as its too risky now.
Hi groovychick,
Best advice is to contact the Occupational Therapist at your local council and ask them to come and do an assessment. They should be able to talk about suitable equipment, problem solve on issues around the home and advise you about any funding that may be available.
h
