Bathing

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jmaggiem

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Hello all again! Thank you for your welcome a few weeks ago when I posted my first message! Now I am writing for some more advice. The man I care for is now on a ventilator, but comes off of it for very short periods of times to go to his computer, bathroom etc. Every 2-3 days I shower him while he sits on a chair in the bathtub. And every single time I worry about him as I can see how incredibly stressful it is for him to sit there trying to breathe. There is no fan in the bathroom so it gets very hot and humid quickly, even though I keep the water temperature cool for him. I always do a quick job washing his hair and body as I worry about him. Does anyone have any other suggestions to bathing? He really isn't ready emotionally for bed baths.
Thank you!
Jill
 

Carol Deboer

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Hi Jill, Physically this man is ready for sponge baths in bed or in his wheelchair. Unfortunately, stubborness is just an element that most men have. We used a bath transfer chair for Henry, he also had a hard time breathing in the bathroom. We tried turning on the central air, but because he had no body fat, he got so cold so quickly, so that was out It came to the time when his male ego had to be relinquished. It is hard for all involved, however, they must remember that in order to make it easier on themselves, they have to make it easy for the caregiver. It takes a bit of doing, coaching, and talking to, but, if it is put to them in a way that makes it better for everyone, sometimes they let their stubborness go to the wayside. My Henry was a typical stubborn Dutchman, right to the end. However, when we showed him how much easier some tasks were for us, and ultimatley making it less taxing on him he gave in, and we went forward. I know that there are few luxuries that als patients enjoy, and I think that a nice shower or bath is one of the thngs that make everyone feel so much better. In conclusion, the alternative that I gave Henry was the garden hose, and that did not sit well with him either. So, the patient sometimes has to be reminded that he or she is not in this als thing alone. Ask him what he would do if he had to do this task for someone else, that might give him some insight to the difficulties that you are experimenting now. Good luck, and hang in there.

Carol
 

Patsy

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Hi Carole and Jill;
Eventhough a patient is ventilated, doesn't mean that they can't enjoy a good shower and/or a bath once or twice a week. I used to work in a neurosurgical ICU at the Toronto Hospital and frequently had patients with brain stem tumours who were paralysed from the neck down and trached/ventilated. I really liked this kind of patients because they were able to communicate in one way or another with them, since the cognitive functions were rarely affected; it was a rarity to be able to communicate with the patients on this unit. When we had long term care patients who were ventilated they usually were assigned to me because I liked to do special things with these patients; for example a shower or bath once a week, a walk outside, a 8 hour visit to their home, a shopping trip, ....ect. I love to organize stuff like that. Where there is a will, there is a way. I have some experience working in the community and if you can tell me your home set up regarding the bathroom and the assistive devices for the bathroom that you have, I may be able to offer you some tips to make it easier on everyone. First you need a good fan, as this very hard for someone with ALS at least for me it is. Second you could bring his vent on a cart on wheels with in the bathroom.
Patsy
 

me

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Hi to Carol, Jill and Patsy.

Carol - I just love how you put things. Even how you so lovingly reason with a stubborn person. My hubby is so stubborn about that kind of stuff it always worries me what I'll do if it comes to him be taken care of. I mentioned in another post that he has broken his foot and already is being "difficult". He says he doesn't have time to be off his feet for 6-8 weeks. I try to remind him that it's 6-8 weeks now or forever if he screws up his foot. Well, that whole discussion usually leads him to getting upset with me for telling him what to do and me getting upset with him because I don't feel like he's being considerate of the impact on me. I throw up my hands and say, fine, do what you want and tell myself I'm not giving him any extra help if he hurts himself worse. I don't suppose that's the right attitude either :oops: Carol, you just put things in perspective so well. I'll remember the "hose" option if I ever need it! If nothing else, it might make everyone involved laugh when they picture it! melissa
 

Carol Deboer

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Hi Melissa,

Thank you for your kind words. I just speak from the heart, and then try to get the head to get in sync with the beating. Sometimes it is so hard to try to give advice to someone who is just not where I am. You know what I mean? TBear and I have been through it, and we have so much that we can share, and then again do not want to sound like know it alls at the same time. So, when a question or problem presents itself on the forum, I weigh the possiblities of answering to certain questions. There are some that I just let go by the wayside, but then sometimes regret not helping out. Sometimes, it is just too hard to relive all of our years with als to others, and sometimes it just pours out of me. Ultimately, we are all here to help one another and to babble on about silly things too. We all need the humour and the laughs to keep going. You tell your man to take it easy, put his feet up and to let you wait on him hand and Uh, foot! Sorry for the pun, could not resist. The pain must be horrible for him. Baby him, he needs you. He is lucky to have such a warm caring wife in you. Keep us posted on the progress of his healing. Love ya...

Carol
 

jmaggiem

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Jul 14, 2005
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Thank you Carol and Patsy for your advice!

Patsy...unfortunately, Dean's bathroom is not ventilated...it has a window but no fan. Other than a chair that is in the actual bath tub, there are no other assistive devices for him. He's pretty good about walking to the bathroom from his bedroom, off his ventilator. He can get in and out of the tub by holding onto the sliding doors on the bath tub. He then sits in his chair, holds a cloth and bow tie to his trach opening while i shower him. He still likes to soap up his own front and legs, while I do the rest and his hair. If I were to move his ventilator into the bathroom (it will be a tight squeeze) do I have to do anything special? Is there anything else that I can do for him? I work with him 6-8 hours a day...we do outings and other things that he enjoys. Soon we will take an adventure fishing...his favourite past time!
Thanks again,
Jill[/code]
 

Patsy

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Reason
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Diagnosis
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Country
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Kapuskasing
Hi Jill;
First try to get an exhaust fan for the bathroom. Then get rid of the shower doors and get one those expanding curtain rods with a plastic shower curtain. The shower doors are unsafe for the patient and you. Did you have the home care occupational therapist in to assess the home/bathroom? Either way you would need her/him to reassess the home set up for the care.
If you had a bathlift that goes up and down, with grab bars on walls, could the patient transfer himself with assistance. A bath would cut down on the steam and keep the patient warm in the water, without the difficulty of breathing hot steam.
The respiratory therapist could offer some advice on the shower situation. What about putting it on the counter? You would need to get a longer tubing to the tracheotomy.
If you could have the ideal, a ceiling tracklift over the tub would be the best for the long term needs. But the occupational therapist would be the best to determine the long term care needs of the patient in relation to his home environment. They can access different equipment from the ALS equipment loan cupboard, ADP (in Ontario) , or local community organizations for the patients needs; the O.T.'s are the experts for this kind of stuff. In Canada we have these services available to the public and we can benefit from them, but we have to ask the community care services.
You can apply to March of Dimes for a grant for home and/or car renovations. Get a social worker to help you with this.
I hope that this helps some. Let me know if I can help more. I may have ALS but it does not limit me from the trying to help others in a positive way !
Patsy
 

Carol Deboer

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I agree Patsy, she should look into getting a OT at the house to help modify for his baths. They know their stuff and will help you out tremendously. There should be some kind of Community Care Access Centre in your area as well that can help you out with home care devices. A bath is such a simple thing, but for someone with als poses some difficulty especially when a vent is involved. Jill, your best bet is to contact a local OT and take it from there, they will gladly help you out. Patsy, a great idea with the shower curtain too. Take care girls.

Carol
 

TBear

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... in Ontario a family doctor would have set up a case worker through access to care to help with this stuff. It would be a good idea to get this connection established for not just an OT but also physios, speech therapists and attendant and home care.
Good luck

CHeers

T,
 

jmaggiem

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Jul 14, 2005
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Thank you so much ladies for all your advice. I am going to call his social worker on Monday, maybe find out about the march of dimes because he and his wife would like to buy a van that can fit his power chair. But in regards to the bathroom situation, I will definitely call his OT and get it all assessed. I have a feeling it will be quite expensive to take out the glass shower doors and the tracking....right now he is able to hang on to those doors for support and get into and out of the bath tub himself.

I have printed out these forums that I am writing to and the responses from all of you for him to read...he quite enjoyed them! Thank you all!

Have a good weekend,
Jill
 
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