Barbarassister's thread- new member

Status
Not open for further replies.

barbarassister

New member
Joined
Sep 19, 2019
Messages
7
Reason
Loved one DX
Diagnosis
06/2017
Country
US
State
NC
City
Winterville
Hi! I am brand new to this forum. I've been trying to find the correct place in which to start. My sister's husband has rapidly-advancing ALS He was diagnosed in Summer 2017. Two years ago this fall, he only had a barely perceptible limp. Today he is completely disabled. My sister (& best friend) is his only caretaker....his choice. We are stuck on two issues that need to be somehow resolved, and are looking for viable suggestions. First, (and please excuse me for this) butt wiping. He WILL NOT let her see him naked, although they've been married for 35 years. So, that being said, does anyone know of a device that would work ergonomically (his hands barely function) and for the obvious (Charmin style). Second, his gag reflex is at a point now where almost anything (it changes minute to minute) causes him to gag violently when ingested. He's lost and continues to lose a lot of weight. He drinks a lot of Boost and protein shakes, sometimes gagging on even those. We, my husband, I, and my sister are working together to help them (him) in any way possible. Thank you in advance for any help /suggestions you can offer.
 
Hello and welcome to the forum. So sorry you find yourself here. I have made your post into its own thread to make it easier for you to get the answers you need.
 
Two immediate thoughts. First, if they have the resources, they should get a toilet seat bidet. I was fortunate to have been given a Toto Washlet but there are others out there. I have remote control on the floor that I operate with my foot. I still need help on and off and with clothing and flushing, but the bidet gives me some independence and dignity.
Second, feeding tube, the sooner the better.
 
Sister, no apologies for any topic you bring up here relative to caring for someone with ALS.

I'm not sure how Barbara's going to care for him over the long haul without seeing his body. They might have a talk with each other or with a trained third party so as not to have to litigate this on an ongoing basis.

The decision to have a feeding tube should be based on his expectations and priorities for the rest of his life, another talk. Not everyone wants one, but he should understand that if he does not get one, the odds of his choking to death or dying from aspiration [pneumonia] are very high.

Thank you for helping out your sis and her husband.

Best,
Laurie
 
Sorry to have to welcome you here. I’m also rather body shy. I never wanted anyone to see me do my toileting activities. Now my partner not only bathes me but has given me the occasional rectal suppository to make me go. We also hired a caregiver who has seen my body in all its glory. Ugh! Sooner or later I’m going to have to accept her help in the bathing and toileting departments as well. I guess the fun never stops in ALS-ville. All I can say to your BIL is that after a while, accepting help gets easier and will be a necessity for your sister to keep her from burning out and to keep him safe and comfortable.

Ditto to everything else that has been suggested here.
 
Just a thought: It's important to understand why he objects. It may be something that, he and his wife getting to the heart of his concerns may ease his mind. If he has a religious objection perhaps their spiritual leader could help.

Doctors and nurses would see him naked. An employed caretaker bathing him would see him naked. If he doesn't object to strangers, perhaps viewing his wife in a nursing role would help. Her wearing nursing scrubs or white jacket during times when caring for his needs may "depersonalize" the situation. His wearing "something", pajama top or shirt and socks during care taking, is not seeing him "completely" naked. That may be a workable compromise.

A loving wife of 35 years is not "looking at him naked" but tenderly caring for him, as she is called to do. Marriage vows often include "in sickness and in health". It's difficult for some men to come to terms with needing help. They're supposed to be the strong one.

In any case, I hope they can find a amicable resolution. May blessings abound. B.
 
A feeding tube would help with his quality of life. I understand some PALS don't want one but it really helps the CALS and other caregivers.

I second the bidet. I have a BioBidet and love it. It actually has an enema function that actually works. It cleans me very well and a man is easier to clean than a woman.

If it's hard for him to accept the type of help he needs, maybe he should join some Facebook groups or come here. We have some very tough men who have no trouble accepting help.
 
Hello and welcome to the forum. So sorry you find yourself here. I have made your post into its own thread to make it easier for you to get the answers you need.
Thank you so very much from my heart. Can you maybe help me please with a way to forward these discussions to her email? I just got off the phone with her. I saw her this afternoon (brought her a Starbucks pumpkin spice frappacino) just before she administered (at his request) his Miralax. It had the desired effect, but he was soooo mortified at having to have help in wiping and cleaning that he just broke down in wracking sobs. She gently explained that as we age, etc. we all need help eventually, and named the family members who have gone before us who did require help. He eventually settled. She was very emotional as she shared this with me. I'm hoping I can share all these kind and sound replies with her. Thank you again.
 
I'm not sure if you're accessing the forum via phone, tablet or pc- but if you look at the top of your screen, you can see the web address of the forum thread you are reading. You can copy that address and paste it into an email.

Or, if you look at the top right of any post, you will see this symbol:
1569117236729.png

If you select that symbol, it will give you a link to copy and you can paste it into your email too.
 
You can also highlight the conversations, copy and paste them in a word document, send them as an e-mail attachment. Or just copy & paste them in an e-mail. B:cool:
 
One of the most difficult things for me living with ALS is loosing control over my body. It’s really, really scary. Fortunately I still have control over my mind. But I’ve had to relinquish body duties to others. As the disease progresses, this includes transportation, bathing, dressing, grooming, toileting, speaking (to an extent), talking on the phone, writing checks, moving my limbs, taking care of my dog, etc., etc. It sucks! But there’s very little alternative as long as I am alive with this disease.

I’m sure every PALS wrestles with this loss of independence to some degree. Acceptance can be very difficult because it means acknowledging the loss of control and entrusting to others what we would normally do for ourselves.

Best of luck to your BIL and to all PALS.
 
It sounds like she made an important step forward - she did what had to be done, he was able to show his feelings and she could acknowledge those feelings and help him move through them. This disease can rob all dignity, but I think that if she can show him that she will help him in a way that truly respects his feelings, then he can realise that his dignity is kept after all.
As a past CALS I can only try to imagine what it is like to lose all that control, but no matter all the things I did, I know that I never fully sat in the shoes of my husband. Handing that control over to others was huge for him too. We did it a little at a time, and he did manage to adjust as we went.
 
Does your sister have Internet access? If so, why not suggest she join our group. She would get so much support from other CALS and answers from PALS. It really helps a lot.
 
I think she will join eventually. I was literally lust telling her how wonderful, uplifting, and encouraging you all are. My BIL has been a law enforcement officer all his adult life. He retired about 5 years ago. Barbara retired last December after 35 years as a research technician in our local med school. She loved her job, but the immediate need to care for her husband forced the retirement. It was not a minute too soon. Timing is everything.

She has said, and told her husband, that she considers it her PRIVILEGE, not her obligation to take care of him. It's with leaking eyes that I can honestly say that she is by far a better person than I.

She has been there for me in all my life challenges from the SIDS death of my daughter in 1977 (lots more in-between stuff) to my husband dying after 73 days from being diagnosed with acute myeloid leukemia 11 years ago. She was my witness when I married again to a friend from church whose wife passed three months before my husband. She and I together aided our parents 6 years ago as their health failed and they passed 6 months apart. They moved here from Michigan just 2 months before my husband was diagnosed.

So.....sorry to ramble, but she and I are a team and so very blessed to have each other. I am going to send all of this to her....or TRY to (lol). I look forward to my continued communication with all of you. You truly are a blessing in our lives.
 
Again, thank you all for your wonderful support. I have shared this forum with Barbara, and it has helped her and her husband move forward with discussion and possible decisions as to how to progress with his care and in which direction. She has contacted the folks at our local ALS clinic and run all of your suggestions by them (ie bidet, feeding tube, hospital bed, etc.)

He is now on a total liquid diet. No more solids....too risky. She fixes him protein shakes with milk and ice cream to increase the caloric content. She'll soon be trying different flavor combinations for him such as our seasonal favorite, pumpkin spice.

She is looking at the logistics of moving out the queen size bed which they still share and moving in a hospital bed for him and a twin size bed for her. They have to be in the same room or she may not hear him at night when he needs her...even with a baby monitor. If the engineering can be worked out for furniture arrangement (the room is kind of small), he may finally be able to sleep on either side of his body. As it is now, he can only sleep on his right side because his breathing (Trilogy) machine can only be on that side. But his right shoulder is beginning to get painful.

They are constantly adapting as each day (sometimes hour) brings changes in his condition. As for the bidet, they are strongly considering that, and will be consulting a plumber as they consider it further. It does appear to be a viable option. Without all of y'all's help and suggestions, they would probably not have either considered these options at all or maybe not be moving forward with those they had already discussed. Thank you again.
 
Status
Not open for further replies.
Back
Top