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mimilu44

New member
Joined
Jul 1, 2012
Messages
3
Reason
Loved one DX
Diagnosis
10/2011
Country
US
State
Florida
City
Palm Harbor
My uncle has recently been diagnosed with ALS. My Aunt is his sole caregiver and it is taking a toll on her. She works full time and has had to take over all of the household chores (inside and out) as well. She feels guilty when she leaves for work that he is stuck in a chair all day but a sense of relief also. She has to use all her muscles to move his legs, transport him from the commode to the chair and vice versa, wash him, shampoo etc. SHe is starting to ache all over . Besides all the physical wear and tear, he can be quite nasty to her. He belittles her and makes her feel incompetent. My Aunt is a very kind, caring woman who would do anything for her family but this is starting to beat her down.
I want to know if anyone else is going through this with their patients. Is this a normal reaction ALS patients have? What coping measures can she use? Can anyone recommend any good books on ALS caregivers?
Also, when is it time to get home care and how to approach the patient with this. My Aunt and sister have lightly touched on this subject with him and he was totally against it.
Please, any suggestions will be greatly appreciated.
 
First of all he has AlS then he should be getting Medicare which will get her the equipment she needs first I would say a Hoyer lift the doctor just has to order one.Me I have a track over my chair, commode, and my bed We bought a coffing hoist and carried it from room to room and then bought two more so we only move the bar now. Your aunt should hand him the phone and tell him to call someone that will do better or go to the nursing home or better yet to appreciate what she does do. Maybe he would think twice about who is doing everything.
Now I will tell you I am not the perfect patient we both have spells were things are not going so smooth. But whatever you or anyone can do to help her will make it so much easier for her. Fix her a meal once a week and get someone else to do the same. Clean a room any thing helps.
 
Welcome to the forum. Sorry about your uncle.

The ALS Assoc. has some information al vid eos available for free. The MDA also has a group of broch ures.

http://www.alsa.org/assets/pdfs/brochures/caregiving.pdf

http://www.alsa.org/als-care/caregivers/caregiving-tips-and-hints.html

http://www.alsa.org/als-care/resources/publications-videos/manuals/

I haven't located the MDA info, as the l i n k is broken.

Found it:

http://mda.org/publications/mda-als-caregivers-guide/introduction

Your uncle may be suffering from Emotional Lability, which causes uncontrollable outbursts of laughter, crying and anger. There is a new medicine called Neudexta to help with that. Of course, if his personality was that way all along, then I would have her take the above advice and tell him to try and find someone to better care for him. She cannot allow him to bully her! Being a caregiver is tough enough without being beat down mentally from verbal abuse. If he were to go to a hospice facility for one week to give her respite, he might change his tune. Having strangers care for him would absolutely not be the same as having a loved one care for him.

I don't know how your aunt will be able to continue down this road without help. I did not work and was my husband's sole caregiver. Before it was all over, I nearly had a nervous breakdown. I hope she can find someone to give her a break.
 
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Have your Aunt make a list of everything that needs to be done on a daily basis. Get outside help to clean the house and take care of any yardwork, household maintenance, etc. Get friends and family members to help with shopping or running errands or whatever they're willing to help with. Ask them to make extra when they cook and bring to your aunt and uncle.

See if his attitude is normal, if not have him evaluated for FTD, or depression.

Being a CALS is a huge job and very stressful. His needs are going to continue to grow. Better to get help early on than have your Aunt become injured or seriously ill. There should be a backup plan in place for his care should something happen to your Aunt.
 
thanks Deb. I appreciate all of your ideas and will pass them on to my aunt.
What is FTD?
 
thanks, I appreciate your ideas.
 
FTD is frontal temporal dementia. It is now associated with about 50% of ALS cases. My husband did not have it, but exhibited many of the behaviors you described. Working with ALS Caregivers in a support group, I now see that most of the PALS treated their wives to varying degrees of bullying. I think it is an attempt to keep some kind of control over their lives. Toward the end of Terry's life, I finally started to understand that. That understanding made it so much easier to deal with the attitude. I just let it roll off of my back most of the time. Usually, after a break, he would discontinue the behavior. I had an old high school friend of his come in 3 days a week for 4 hour stretchs so that I could get out of the house. I was getting ready to up that to 4 days a week. It made all of the difference in the world. For other CALS around here that had to go to work and leave their PALS, we set up schedules of friends from church, work and of course family to come in and visit during the day. I think boredom is a major enemy for many PALS. Possibly that is what is happening with your uncle. I would suggest that your aunt call his neurologist (or primary care physician) and discuss it with them so that they can check into it before the next visit. Many doctors are seeing ALS for the first time and need a heads up so they can be prepared for appointments.
 
ftd is frontal temporal dementia. you can find more info on the forums page.
 
My sister was diagnosed with ALS just before Mother's Day 2012 so we are all new at this although she has been exhibiting progressing symptoms since last fall. Drs. thought it was recurring Lyme. Her husband is her primary caregiver and family members were filling in mornings and other times. Her symptoms are progressing rapidly and she realized she wanted professional care several weeks ago. Maybe a man sees it differently and thinks a wife should be able to take care of all his needs. I would think the Care Manager from the ALS assn should be able to guide your aunt in this and talk with your uncle. My sister and her husband have now engaged 2 CNA's to keep the hours covered and she feels safer, especially for her morning routine and at night when she wakes up in a panic that she can't move and will not be able to breathe. I too have observed that she has unrealistic expectations for her husband who is trying to keep all the balls of their lives in the air as well as take care of her and their home. He is doing all the marketing, cooking, etc. is very strong but 24/7 takes a toll. They do have housekeepers to come in every other week. They are lucky to have sufficient funds to have this level of extra care. This professional help was her idea even though she is very demanding of her husband. She was a fairly picky person before but then she could do all of her own bidding. Now that she is practically helpless this part of her is a challenge for all her caregivers. As with any disease that is chronic and requires so much care, the primary must get respite and some time to themselves to keep their minds and bodies strong. We keep time available for her husband to still get to the gym for physical exercise and to see his guy friends. Everyone needs to download and this disease is really awful. Thanks to the folks writing about FTD - that might hold some clues to some questions I have.
 
My husband was diagnosed inMay of this year, he hid it from me (I was unable to attend that Dr. Visit). He still works, as it has mostly affected his speech and swallowing. he has a peg. He can things to help each other buts sits on his butt at home and does nothing. He has a peg, and doesn't even help with assembling his food. I do it'll and am just about burned out and we are far from done with this monster.
I am so frustrated. Friends want to help, but I don't know what to have them do. I feel he just doesn't care, I am upset. I am about ready to leave for a week. Maybe that will makes him see what I do.
I cry and he doesn't care...I am on extra anti depressants and they are not helping.

Does the state of CA have a caregiver assistant program? He is not a veteran.
 
Magkeep,
Welcome to forum! I'm sorry you're getting worn out! This a disease that can consume both of you, but there are things you can do. Is your hubby on formula? Mine is a bulbarian also but he prepares his own food as he is on formula, but before that he cooked his meals as I was working and he wanted and still wants the independence. Lotsa help ing hands is a place you can go to organize friends and family for help. It's in ter net based and doesn't take long to set up. Have friends come in and do laundry, vacuum, bring over a meal, sit with him while you go out.

If he wasn't ill, would you allow his behavior to continue?

Connect with your local ALS organization. They should help YOU with his care as well as resources and equip ment. His insurance should also help, ask for a case man a ger.

I wish you the best... Keep us posted!

Jen
 
Magkeep, could you give a little more info about your situation? What food are you assembling? Is he not on formula or is he still able to take certain soft foods by mouth? It's just been a couple of months. There must be more to your story. Do you work and then come home to take care of him?

I hope you will respond so we can perhaps offer advice from our collective experiences.
 
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