brandysuki

[brandysuki]

thanks for your helpful replies everyone re my wife’s right side leaning. She is also now having very great difficulty in walking, both her feet/legs keep freezing so I am having to use a wheelchair inside. It is also very difficult getting her to the commode/ toilet at night as she has a problem standing when getting out of bed. This is just a moan but I am 87 and intend keeping her at home we haven’t been apart for 65 years ! My thoughts are with all of you who suffer from this appalling disease!

[Sparkie44]

Disabled

[Millidog]

Have you considered a Sara Stedy for transfers inside the house. We find this particularly useful getting my husband up from bed to toilet, from bed to shower chair which may be useful for easier movement around the house and for transferring to rise recline chair etc and it was provided by the OT.

[Millidog in reply to Millidog]

Forgot to mention that they can provide belts to fit to the sara stedy to help with any leaning. The other thing to ask an OT about is a mobile hoist as that may ve more suitable fir you and again these can be fitted with support belts or safety slings

[brandysuki in reply to Millidog]

Thank you for the advice, I will definitely contact OT again. I have heard of the Sara Steady but last time I mentioned it they said it wasn’t suitable for moving from carpet to hard floor. Have you any experience with this?

[Millidog in reply to brandysuki]

Hi it's agreat piece of equipment although we do have hard floors throughout we did though have a rug for a while under the bed and it certainly worked across that...the main issue with that was the loose edges of the rug which you wouldn't have with a carpet but I suppose it depends how thick the carpet is. If you ask this as a specific new question on here I'm sure you'll get responses from people with experience of username carpets. Good luck

[brandysuki in reply to Millidog]

Thanks for your reply x

[Bertieandpiper]

Hi Branysuki

If you don’t have a referral to an OT in place please ask for one to reassess your wife and you, as a Sara Steady maybe useful to help you transferring from bed/chair to the toilet/commode. I found this an invaluable piece of equipment to be able to continue to care for my husband at home once his walking deteriorated. They are also available I believe, with a safety strap to support with leaning,

Take care.

[brandysuki in reply to Bertieandpiper]

Thanks for the advice, last time I contacted OT they said a Sara steady was not suitable for moving from carpet to hard floor. Have you any experience with this?

[Oumarusk in reply to brandysuki]

I was told the same might be a problem with the Mo Lift but our carpet isn't a piled one and with lining the wheels up directly in line with the carpet edge, and pulling it towards me, I easily get it from the hard floor onto the carpet.

[brandysuki in reply to Oumarusk]

Thanks I will look into it. I have had many helpful responses.x

[Soltmany in reply to brandysuki]

My dad cannot use Sara steady , but standing hoist yes

[Bertieandpiper in reply to brandysuki]

Hi Brandysuki

We have hard floors throughout so it may depend on the pile of your carpet as others have suggested. However an assessment for a piece of equipment is also about the OT assessing how the caregiver can manage it within your own home situation, and certainly in our case our OT firstly ordered a Sarah Steady to try and had it not been suitable for us both she would move onto something else.

Best wishes

[brandysuki in reply to Bertieandpiper]

Thanks. The Sara steady or the molift seem to be the choice so far so I will investigate.x

[Pspuser]

Hi Brandysuki,

You may also like to consider a wheeled commode/shower chair. They can also be used to move a person around the house, they are a bit more manoeuvrable than a standard wheelchair.

In the first instance contact an O.T. and physio. Ring your local Social Services and ask for an assessment.

Are you in contact with Marie Curie? We are finding them very helpful. You need to be referred to them. The Parkinson’s nurse at the hospital referred us, but the OT/physio may be able to

[brandysuki in reply to Pspuser]

Thank you we are in contact with OT and have a wheeled commode and shower chair so will go back to OT. 🙏xx

[brandysuki in reply to Pspuser]

In addition I forgot to say we are in good contact with the local hospice who are helpful in giving me a break occasionally! X

[LuisRodicioRodicio]

Hi brandysuki!

In my opinion, the situation you describe requires urgent, substantial support 24/7. The care you describe has a huge impact on the caregiver, regardless of their age.

Faced with the dilemma of caring for the patient at home or in a nursing home, I share these words from “Dance 1955”:

“How is it that there is so much ignorance in nursing homes hospitals etc etc.? When my husband was diagnosed with this disease I didn't understand it either so I googled it.

Whenever I take him somewhere a nursing home/hospital I always give instructions/information about the disease but it doesn't get read they don't have time so I have to spend all my time going in and eventually taking him home as it's easier for me in the end.”

In our case, we decided to care for the patient at home. This implied a significant economic cost and a demanding personal dedication on the part of the caregivers, especially the leader caregiver.

Fortunately we had set aside a fund of money "just in case we need it one day." In our case and circumstances we kept the patient at home until the end. I believe we did what was best for the patient, caregivers, and family members.

A big hug.

Luis

[brandysuki in reply to LuisRodicioRodicio]

Thanks for replying, we have decided that as long as possible we will keep my wife at home however difficult it may be. We are getting a great nhs help so far. Xx

[LuisRodicioRodicio]

I recommend reading the document that "daddyt" posted today in third position "Caregiver burnout":

pspawareness.com/blogs/psp-...

[brandysuki in reply to LuisRodicioRodicio]

thanks I will do, anything to help. Xx

[Soltmany]

standing hoist could help , incontinencechoice pads and urine incontinence much better than NHS , I use straps to keep to chair like back support prevent the leaning, recliner chair with wings … air cushion mattress and for wheelchair and recliner chair, keep boweks open every day ..prunes are the best from jar without pits

[brandysuki in reply to Soltmany]

Thank you for your reply, will definitely check on your suggestions we do use Depend pads which are quite good, but OT are suggesting nhs pads can absorb more water we wait and see!! 🙏xx

[Soltmany in reply to brandysuki]

incontinencechoice.co.uk/in...

I tried NHS pads and they contracts with type of pads very insufficient . I buy for dad from this website all good better than what contract in NHS can provide

[Soltmany in reply to brandysuki]

The bath in bed

The bed bath equipments

[Oumarusk]

I've had a similar problem with my husband. Approximately two weeks ago we received a Mo Lift, and for now it's made life a lot easier for me.

He can pull himself into a standing position while holding onto the Mo Lift and then be turned to sit on the wheelchair. I also push him the short distance to the commode in the bathroom.

Prior to the Mo Lift arriving my husband had ended up on the floor while we were try to get him into the wheelchair.

Hope you can get something suitable to assist you.

Take care

[brandysuki in reply to Oumarusk]

Thank you we are looking into it. X

[Mayf1eld24]

I am so sorry to hear about your wife and the problems you are having. I am finding it very difficult myself with my husband. I am 10 yrs younger than you, but am finding it near nye impossible. Hopefully, we will last out!

[brandysuki in reply to Mayf1eld24]

it is very difficult but we soldier on! Good to hear from you x