New in need of advice!

[sleaf4]

Hi this is my first time posting although I have lurked around a bit. My mother has ALS and it seems recently she has been slipping. The next big hurdle my Dad is about to tackle is the bathroom. He has been looking at walk in tubs. Before he makes a hasty decision I would like to ask for some advice. Tub with lift or wheel in shower? Which do you find works better for your PAL? I know my mother would like to soak in a bath but I am thinking this could be difficult even with a lift.

I am afraid of my Dad making another hasty decision. He bought a van, a new Ford Transit Connect equipped with a wheelchair lift. However, he didn't do enough research and it seems that the lift has a weight limit that may not be enough to hold Mom and her wheelchair. Also the ceiling may not be high enough. So its ok for now because the chair can go in the back and Mom can still get into the passenger seat but when she can no longer do that its not going to help.

We are just feeling a little lost, other things we need to face are a home health aide, personal hygeine etc. We don't know where to begin.

Thanks for any advice.
Sue

 

[brooksea]

Sue, I'm very sorry about your mom. When was she d x d and how old is she, if you don't mind me asking?

As for the bathroom, a roll-in shower may be the best. If she is already unsteady on her feet (and elderly and frail), you can get a rolling shower chair. We have one made from PVC type tubing with a mesh material back and plastic covered cushioned seat. You may be able to find one in the loaner closet of your local ALS Assoc.

Is your mom on Medicare? We need to know that in order to answer about home health, etc...

I'll try to find something further about the shower for you.

Here is a look at how a former member (RIP) re-modeled his shower:

https://www.alsforums.com/forum/members/771-bathroom-albums117.html

I will see if his website is still up, as it had lots of helpful info. You might also want to look under the TIPS forum on this site.

Found it:

http://www.lifewithals.com/

 

[sleaf4]

My beautiful mother is 68 years old. She was diagnosed about two years ago. We believe it probably took them at least two years to figure out what she had. She can no longer walk but can get herself from her scooter into a chair or bed or onto the toilet or bath chair right now. But.. its getting harder for her. She is currently involved with a drug trial and had the opportunity last week to fly to Florida for an ALS seminar with my Dad and her doctors. The seminar was awesome the flights were a nightmare and she was treated very poorly. She and my Dad spent the night in the Dulles airport terminal. Can you imagine? I'm getting ready to contact the airlines and give them a piece of my mind.

She is getting ready to get a BIPAP and has a hospital bed at home. I believe that she does have medicare. She has trouble getting dressed and lately seems to be wearing sweatpants and sweatshirt. Easy to get on and off. I believe that she needs some kind of home health aide to come in and help with bathing. She refuses to let my Dad help her and he stands outside the bathroom to listen and make sure she doesn't fall. She has cut back on the number of showers she takes and its sad because this is just not my Mom.

Sorry, I know this is lengthy. Can you tell I need someone to talk to?

Sue

 

[brooksea]

There are many stories out there about how horribly pALS have been treated by the travel industry. Not much can be done, I'm afraid.

My goodness, she sounds even more stubborn than my husband! She will have to face that she does indeed need help. If she is on Medicare, they will not pay for in home health care except for a specific medical need, such as checking and caring for a pressure sore, or after a hospital stay. A doctor must write up an order for the requirement. However, Medicare will pay for Hospice care. You may want to suggest to your dad that he discuss this with the ALS clinic or her personal physician. Hospice has changed over the years and calling them in does not mean that death is imminent. They will provide a nurse, nurse assistant (personal care), social worker, chaplain, and respite. You could call a couple in her area to get more details on what they can offer.

She may be opposed to the idea of Hospice, as was my husband. I have finally talked him into it after discussing this with him for several months. If you have other family that can help you in persuading both your parents of the need, that might be more persuasive. (That's what I did.)

Otherwise, your parents will have to pay out of pocket for home care.

PS-

Is she opting for a feeding tube or trach? If she wants a feeding tube, she needs to get one before hospice (as far as I know - my husband has one and the hospice here has no problem with that). And you would have to check and see if any hospice agencies in her area take a trach/vented patient. These would be seen as "life saving/prolonging" measures.

Don't apologize for long posts! We all know exactly where you are coming from and support each other as best we can.

 

[sleaf4]

At her last clinic appointment they discussed the feeding tube and doing the surgery now to place the thing (not sure of the technical term) in her body that the tube will connect to. They want to do that before she is too weak. So far they haven't discussed the ventilator.

She is extremely stubborn. So.. I think she has private insurance also her and my Dad worked and had insurance so maybe that would pay for home health aide? I brought it up to my Dad today and he said that she will never go for it. I love the pictures of that bathroom. Told my Dad about it he says there is no way he could do a 7' X 7' shower. They would have to take out an entire bedroom and they can't do that. But... he thinks he should be able to do something like that where the bathtub he has now is. After Thanksgiving he is having a guy come in that does this for a living so hopefully they can come up with something. The chair in the pictures looks perfect so I will start looking around for one of those.

I emailed the link to Joel's website to my Mom. Hoping that maybe it would be inspirational to her. She has dealt quite well with this so far but I can see lately that she is sad and more quiet and I can only imagine how she feels.

Thanks for your advice and for listening.

Sue

 

[ScarlettK]

Sue,
Glad to have you here and so sad for the reason. So many just like brooksea will give you lots of valuable information to help. Chat anyone of us here and vent anytime that you feel the need. No apologies are even necessary. I will be glad to talk to you anytime if you have questions. I offer prayer as a great relief for me as well as so many here. Sending prayers on your behalf and your mom and dad's as well. Love, Kaye

 

[sleaf4]

Thank you so much Kaye. And thanks again Brooksea.

 

[momap53]

Sue, I'm so sorry for the Dx that brought you here. You'll find a wealth of information and a compassionate and caring audience as you traverse this rocky road with your family. Learn to use the search engine here on the forum. It will open up a wonderland of tip, tricks, advice etc from those who have gone before. So glad you found us!

 

[10steps]

Hi, sorry about your mom.

We went with the roll in shower, swapped out the existing bathtub/shower, and had a rolling shower chair. In later stages my husband used a reclining shower chair essentially to aid with breathing while showering. Handrails extend the length of the shower and the back. With our set up it was possible to stay outside the shower and bathe him but i usually got in. it was easier and more fun.

If they don't have a bidet(i recommend the remote control with all the functions)they should definitely get one. Best $500 I spent. In fact, my mom was just out (shes 78, no ALS) loved it! no kidding, she was calling all her cronies about the revelation lol! ours is all part of a toilet seat,so no plumber was needed and it took me an hour to install. Sounds like your dad would have no problem.

She will get over not letting your dad or an aid help. Its very hard at first, more the thought of it then hopefully she realizes it isn't so bad and no big deal. When my husband was at that point i couldn't figure out what the weird smell was. I ws baffled because i knew he was going in and taking a shower everyday. My 17 year old daughter was agast and in her frustration and asked if he was rotting too.(Family Circus) Turned out he really wasn't capable of lifting his arms to properly bathe all areas. That's when I said no problem, we'll go in together.

My better aides I found asking friends about folks they knew and when the 2 that previously worked in nursing homes or with hospice were great.

 

[susanf]

Hi Sue, Sorry about your Mom.
You might want to join a ALS caregiver group with your Dad. It sounds like you could use some support.

 

[Mrs C]

I normally offer the shower aids in this way: " please do it for me. It will ease my mind and make ME feel better." that was an easy, no ego deflating, way of introducing these shower aids into his routine. Now it is just what we do together so I don't worry.

 

[sleaf4]

Wow thanks for all of the advice.

So do you think it is possible to build a roll in shower in the same space where a standard tub and shower unit used to be? Thats what my Dad thinks he is going to do.

What is the toilet thing called? I am thinking I would just buy that for her. No doubt my Dad or anyone else that used it would like it too!

Next Thursday my brother my sister in law and myself will be going to our first support group meeting. I really feel like we are behind the 8 ball. I feel we are reacting instead of being proactive. I know there is a ton of stuff we should have already and don't.

I am thinking about emailing one of her Dr's. I don't think my mother is being completely honest with them when they ask questions like are you able to dress yourself? She says yes but I know that she has trouble. Noticed most of the time she doesn't put a bra on. Dad says she has trouble with zippers etc. So I think when she does this it just delays her getting the help or equipment that she needs. I don't know if I would be out of place by contacting her Dr. What does everyone think of that?

Gosh I appreciate your input so much.

Sue

 

[Mrs C]

Sue, Get in touch with your local ALS loan closet. They have many tools and things to make her life easier for many things.

 

[Ms. Pie]

Can you find an ALS support group and loner closet near you?

http://www.alsa.org/search.jsp?query=New+York

 

[Mrs C]

PocketDresser works wonders!