PSP Association
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Hair washing & sleeping alone

My husband has great hair, but I am having a hard time washing it. He seems to be unable to tilt his head back at all. I tried a plastic funnel that goes around his neck, he was wet from head to toe. I have tried a shampoo cap, but it made his hair crusty . It is so difficult to move him, I dress him in bed, so if he’s wet it is really hard for me to change his clothes.

Our bedroom is upstairs. we hope to move next year. Although he have a chair on the stairs to get him up, it is a struggle. We need an extra person to help every night. I am planning on putting a hospital bed in the living room. Not at all ideal, and something I did not want to do, but becoming necessary as an option . The problem is, I will be upstairs. He says he has no problem with that. I rationalize that if he was in a care home he’d be in his room alone, but I still feel quilty. Any ideas. I plan on getting a video monitor so I can see him. At this point he usually sleeps OK.

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Wow ~ sounds like our next step ~ Jack is still able to get up the stairs one step at a time with coaching . But, I know that can change quickly. Walking across a room is more of a problem ~ He can manage about three maybe four steps until a gait freeze or stumble. I have it in mind to make the liv. room a bedroom. I am preparing our house to put on the market - not something I want to do . Painting , purging, new garage roof etc...trying to organize. Everything I'm doing needed to be done anyway!

I have done a little elder-care in the past and recall using wash clothes to clean heads and hair. No tricks - sorry😕

I've heard the stair chairs can be problematic and have avoided looking into them. How much damage does the installation do to the house? Our house is 95 yrs. old and damaging anything is not a good idea for resale - 😕????

Goota go

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The chair lift we have has three plates with four bolts each screwed into the stairs at the top, middle and bottom. A socket is needed to plug it in. There was a socket at the bottom already. Our house is 119 years old. When the rail is removed there will be holes in the wood stairs where the screws are. This will be an as is sale when I sell this place. I’m not worrying about making it pristine.

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Yes, we live here now - the house is for us today!!!!

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Wow ~ 119!!!!!

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The stair chair worked wonderful for the past year. Ours is just as Jeff explained. Our stairs are carpeted and there will be a few holes when it is removed.

Unfortunately our staircase includes two small chairs at the bottom and one at the top. He needs someone to help support him now, or he will fall backwards. It is a struggle for him. He looks worried, and breaths hard each night, SAD

Karyn

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Bathing Larry daily he has a shower chair. He sits on it and I hand him things. He was doing his own hair but lifting his arms was bothering him. I use a hand held shower on him. I wet his hair, shampoo then rinse. It runs down his body. After he soaps his body I rinse him off.

You should have an occupational therapist come into your home to give you ideas how to do things. If they don’t come in ask one about how to go about washing hair with a stiff neck.

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That’s the way we used to do it. I am no longer able to get him in the shower safely, although we have several bars on the walls. He cannnot always grip the bars, and his back is rigid, so it is hard to move it .

Thank you for your reply.

Karyn

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Karyn not sure if you live in the UK? I bought some shampoo caps for my husband and they were great. They came from Completecareshop.co.uk. just checked them and they are still selling them. I got a large box for just under £40. There was never any problem with them and his hair was so soft afterwards.

I was in the same position as you and wondered about sleeping in the recliner downstairs. Before I had to make that decision he got pneumonia and afterwards went into a Care Home. I really wanted to get him home but because of funding problems I couldn't. Then he aspirated and ended up in hospital again. Sadly he died there. So consider can you get someone to sleep in overnight? Or are you prepared to sleep in a recliner? You need help though. You shouldn't have to try to dress him alone. He definitely needs to be double handled.

It's not right that you are caring for your husband alone.

Take care of yourself.

Marie x

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Thanks for your kind words. I am in the US. Can you please check the brand name of the shampoo caps. Perhaps I can find them here.

At this point I must pay for care. I hope to get someone for 2 hours each week. I hope he will become comfortable and the I will also have someone on board. Outside of PSP, he is very healthy. We have no idea what the future will bring.

I am not able to sleep in a recliner. I just can’t sleep. I hope to find a home that will work better, but not much is for sale at this time of the year.

Thanks again for sharing your story . Your kindness really helps,

Karyn

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Karyn they don't have a specific name on them. They are called Shampoo Cap. This firm also supplies the NHS so it is pretty good. You just pop the cap into the microwave for a few seconds and then put it on and massage. No rinsing either, and people on the site gave them 5 stars which is the top rating. Look on the site and maybe send them an email asking if they know of a firm in the UK who supply the same product?

I hope they know of a firm there. I don't know what it would cost to send them to you but noticed you can pay using PayPal.

Hugs to you.

Marie x

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I saw the shower caps on eBay, Karyn.

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there is a dry shampoo that some people use, I'm not sure which brand but it seems to be good, I realize it's not ideal but maybe it can be used more frequently and the proper hair shampooing can happen after some time

regarding having the hospital bed downstairs, that sounds like a good option, less stress for you and your hubby - but please keep in mind patients get very stressed out if their environment changes, so I would suggest putting his familiar items around the bed and trying to place the bed in a similar position to his own bed upstairs - lastly, patients are known to get up and try and move on their own and end up falling and hurting themselves so you may want to pull up the side bars of the hospital bed but also somehow keep a check so that if he really wants to move, to help him get up or just talk to him

sorry about this, it's a very difficult condition to handle

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I am hoping to ease into the bed downstairs, letting him choose to go up or stay down. At this point he is usually pretty still at night, but there was one night he was dreaming and tried to get up. I will definitely keep the sides up on the bed. He cannot sit up from a flat position in bed by himself, but put his leg down to feel for the floor. He is often bowel incontinent too, which will harder to deal with near the main living area, but easier with a smaller bed. In our bed now, I can only reach him on one side for dressing etc.

He is truly an incredible man and this is so tough. I just wish we could have a small conversation . Sometimes I really think he’s not there anymore . Then, maybe it’s good if he is not aware of all PSP does,. He is aware of the struggle .

Thank you.

Karyn

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You could try dry shampoos? Xx

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So sorry to hear all your going through, it is a continual nightmare, my husband has CBD, and we are into year 10, we moved into a bungalow 2 years ago, and have to use the lounge as his bedroom , we have a hospital bed with a hoist and he has a recliner chair for daytime, so our kitchen diner is now our kitchen lounge, we had a wet room put in so can wheel him in on a comode,if Ian needs his hair washed in between I use a washing up bowl balanced on pillows and tilted, with the head section of the bed raised up, it is awkward and takes 2; one to hold bowl and one to do the shampoo, hope this helps.

We have to do what we can to make life comfortable, Ian is not isolated as I am in and out, I do as many chores in the lounge as I can like ironing and I sit with him a lot, I know for sure it is better than him going into care, as the few times he has for respite he goes into a decline, stops talking etc.

Hope you manage to sort things out with your OT and maybe in the new year there will be more suitable properties coming up, when we moved we had lived in our house for 30 years so it was a mission, and I did book respite for 2 days for the move, and we did Ian’s room first, but he has settled in and loves the fact that he can see people from his chair and waves to them,

Good luck, I will look out for your news ❤️ X

Janet

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Thanks for your reply. Is Ian OK sleeping in a room alone? At this point Dan was able to say he was fine with it.

10 years is a long time struggle with this disease. I have thought of trying to wash his hair in bed. I think that might work because his head in already tilted.

Do you use a hoist to get Ian on and off the commode yourself. I may have to go to something like that in the future and I am wondering if I can do it alone. I am in the US. My children help get him into bed and into the car , but otherwise I am on my own. He rarely gets out of his recliner during the day. I hope to pay a caregiver a few hours a week so I can leave the house a little more. At this point one of our sons or daughters stay with him . I try to not leave for too long.

Thanks. Your advice was very helpful.

Karyn

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Karyn,

Yes Ian is ok at night, I keep my bedroom door open so I can hear if he calls,me, it is next to the lounge, I have a ceiling hoist, so it is manageable on your own, but I have a carer twice a day as I can’t roll him myself, we dress him on the bed and put him in his chair, our OT are very good at identifying our needs.

Would you get funding from your government, we get an allowance which we top up, to pay for care, I have a private carer now as the agency’s were too unreliable and I was stressing a lot, now we have a male and he is fantastic with Ian. I also employ a PA so I can do some volunteer work for an afternoon.

I hope you sort things out, and if you can find a bungalow life is so much easier, even things like cleaning the windows I can do myself now.

Let us know and keep posting, this is the best site ever x

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You might try one of those are "dry shampoos" that come in the spray cans. We use that most times (and it works well for my moms thick hair) and then save the deep wash for when in the bathtub. Good luck!

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why dont you ask the ot for a wet room it would be a lot easeier for you you local council has funding to put extension

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I am in the US,

Thanks

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Hallo, Karyn,

I'm so sorry to hear about your husband.

I used a plastic inflateable basin, with a drainage tube, to wash my mum's hair. Here is a link,

completecareshop.co.uk/bath...

It was really effective. Sending you both all good wishes.

Amanda.

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Thanks. I think that is the solution.

Karyn.

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We wash my moms hair with the handheld part of the shower and just hold a towel over her face to keep it out of here eyes

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Is she able to tilt her head. When I tried it, with his head straight, I got him and the room soaked.

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LOL ~ I can just hear my cuss storm over that situation😑

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