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pmbenb83

Distinguished member
Joined
Aug 6, 2007
Messages
399
Diagnosis
03/2008
Country
US
State
VA
City
Stafford
Lindasue ~ I'm so sorry to hear about your brother having this awful disease. My heart goes out to you and your family. My personal opinion is that he probably really cannot do as much now because he is so weak. Also, most men are too proud to allow anyone to take care of them, and for one to ask for help, there must be a reason. My husband's doctors told him to take it easy to preserve his muscles, so I'm not sure if not doing for himself is hurting him or not. You could always call the doctor's office and ask the doctor or nurse.

Jackie ~ I am so sorry to hear about your blood pressure. I think your doctor is right... you need to have a break during the day. It's kind of like the airline philosophy.... in case of an emergency and the oxygen masks deploy, the parent is to take the oxygen first and then give to the child. It sounds like you need to catch your breath, so that you can continue being the wonderful caregiver and wife that you can be. Please take care of yourself too. :)

My best to you both,
Pam B in Va
 

cukita99

Distinguished member
Joined
Jun 12, 2007
Messages
361
Reason
PALS
Country
US
State
tx
City
el paso
jackie, u need a break. i have ALS n i have 2 pay out of my pocket 4 her help. she works mon. - friday but during the night she closes her door 2 her room n ignores my cry 4 help. i wake up at 10am n she gives me a bath, makes me breakfast n then she goes about her business comes 2 remove the plate, puts my computer in front of me n sits 2 watch tv n only if i need 2 i ask 2b taken 2 the batroom n she needs 2 clean me then back 2 my computer n lunch n dinner n bed at 10pm. she leaves friday at 4pm n i go 2 my parents house. my son helps my 79yr old mom take care of me. he holds me up n my mom puts the portable toilet 4 me. my son puts me 2 bed on weekends so its not 2 much 4 one person. i know we need lots of help n it wears the caretaker out. i give all the caretakers a lot of credit. if it werent 4 all ur help i would b more depress than what i am now. i try 2b nice but i know sometimes i am difficult. ur husband is lucky 2 have u take care of him n will understand that u need a break. hang in there.
 

hearts_and_thoughts

Active member
Joined
Feb 6, 2008
Messages
56
Reason
CALS
Country
US
State
OH
City
Burton
I have to say that I can relate to the burdens of full time care for my brother with ALS. He has progressed rapidly and is very weak and cannot do alot for himself any longer. He cannot help this. However, what I am learning firsthand is that as the caregiver, I must take care of myself. I also have high blood pressure for the first time in my 44 years. The weaker or sicker I get, the less I can help my brother with. My brother has to choose what things he prefers to spend his strength on. However, he also is learning to cut back his requests for help when it isn't absolutely necessary. I also am learning to set limitations. For example, he wears t-shirts in winter and gets cold constantly and expects me to keep adjusting his blankets to keep him warm. I have finally told him that he must put on long sleeved shirt because I will not assist with his blanket unless he does this. He gets mad when I set limitations and tries to make me feel guilty...tonight he actually kicked over his hospital table which I had to clean up mess because I wouldn't adjust his blanket as he sits in his wheelchair. That outburst didn't change my mind nor did his comments. There are things that "have to" be done and the constant blanket adjustment was not a "have to". It seems like nothing, but when your entire day is spent living and breathing for someone else's constant needs, those "small" things add up quickly.

Take care of yourself because you won't be good for anyone else if you don't!
 

lindasue

Member
Joined
Jul 17, 2007
Messages
13
Reason
Loved one DX
Country
US
State
IL
City
Springfield
thanks everyone for all your insights. i've come to realize that my brother is not asking for more help than he needs, he really is progressing super fast and really needs the help. jimmy was just diagnosed 8 months ago but i now brush his hair, help him dress, help him eat, brush his teeth, shave him, scratch his itches, help him from one place to another (he's using a rollater, not sure for how much longer), get him things, do his laundry, take care of his mail/bills, file his nails, etc, etc, all while babysitting for my 5month old granddaughter (only 3 times a week). i "snapped" (just a little one :) 2 weeks ago, but have since managed to get it back together. every other week jimmy stays at our sister pams house, but during the weeks at her house i go over during the day and care for jimmy as pam works. i fear that i'm going to have to go back to work soon and we'll have to hire a caretaker as i've exhausted my funds and i have lots of bills.

anyway, jimmy is now very anxious about needing help to wipe after a bowel movement. he cries that someone is going to have to help him do such a private thing. i was looking at a gadget called a bottom buddy, but he thinks he would not be able to grasp the handle, so now i'm looking a special toilet seats that can be added to existing toilets, they use water / no wiping is necessary. is anyone familiar with these? do they really work? any better suggestions?

thanks!
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
Lindasue let me say first off I know nothing of the product I'm about to post a link to nor any similar ones because to date I do not need them. There are bidet seats basically that simply replace the existing toilet seat which may help with this. An example of one can be seen here: http://www.gooddaybidet.com/cleanbutt-bidetspa1.html

That was simply the first one I found on the net so I know nothing of quality, price or features. I picked that one only as an example. I'm sure if you do some research you can find some more information. I went to Google and searched for bidet seat. Hope that helps.
 

hearts_and_thoughts

Active member
Joined
Feb 6, 2008
Messages
56
Reason
CALS
Country
US
State
OH
City
Burton
I've been told that the ALS or MDA clinics help with providing equipment. Perhaps they can assist with the bidet seat. Also, another thought, why I didn't think of this for myself, I don't know...would be to contact National Honor Society students to assist with household chores. They have to do so many hours of community service. This is tough at my age, I can't imagine how I'd do it full time at your age! I am in awe at the energy you must possess.

I hope that you get some very needed help. Your brother wasn't a vet by any chance, was he?

Prayers are with you and your brother...
Mary Jo
 

kelly

Senior member
Joined
Oct 6, 2006
Messages
661
Country
US
State
ny
City
saratoga springs
Bidet

My husband recently purchased a bidet..it has been a lifesaver...and allows him to maintain his dignity. Definitely a useful investment.
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Having read posts about bidet's before I did a search on the Home Depot web site. I think they are $400-$500. Didn't seem that difficult to replace the regular toilet seat with a bidet one. They even had a good selection.

Sharonca
 

kelly

Senior member
Joined
Oct 6, 2006
Messages
661
Country
US
State
ny
City
saratoga springs
installation

I actually installed it all by myself...of course with my husband adding his two cents!
 

AHands

Distinguished member
Joined
Dec 10, 2007
Messages
206
Reason
PALS
Country
US
State
NC
City
Carrboro
Bidet

scratch his itches

Bless you!
My progress(? decline) has been quite gradual...so far my biggest daily challenges (arm onset) are things like dressing, picking up pills, but I fear, more than feeding tube or vent, the day I can't scratch an itch.

i'm interested in the bidet. i've never used one. i've traveled a little in india and bulgaria where "asian" or "turkish" options were available, but the ones i saw weren't quite bidet--more like a ceramic floor with drain and hose. even so, after getting over the initial culture shock of making do without tp, it seemed apparent to me that using water instead of paper made for far cleaner results--especially important when bicycling.

i think i'd like to have installed a bidet of sort that is generally useful, not just to the handicapped. recommendations?
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
City
Mays Landing
Dear Linda Sue

You are a very special person and sister. I care for my husband and he thanks me all the time. His hands are getting useless and needs help with everything. Every single day my heart breaks for him. I still dream of his arms and hands working. He waves to me in my dreams and he is well in my dreams.

My prayers for all ALS patients and caregivers is for God to give us HIS strength, HIS courage and that HE give us scientists and doctors to find a treatment and cure for this horrible life sucking disease.

You are an angel to your brother.

Patty:)
 

Elaine Ramos

New member
Joined
Feb 22, 2008
Messages
6
Reason
CALS
Diagnosis
03/2006
Country
US
State
New Mexico
City
Albuquerque
my husband has bulbar onset diagnosed 2 yrs ago. he has 30%fvc and close respiratory failure. I kinda think he could possibly die before he loses use of his extremities. it sounds like your father did. docs want you to think he won't die until he chooses and that would be when he is fully paralyzed but i don't think so. i think he could die before he becomes fully paralyzed. any insight?
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Hi Elaine! Read your posts, and will try to reply to this one. Firstly, so sorry to hear about your husband's fate. It is hard on the loved ones, too. God will be with him always, and I know He will help him during this journey. I will keep him in my prayers. When my son was sick with this hellish disease I tried not to think about death. I focused on quality time with him, making him happy and comfortable. I knew he was dying, but I turned that over to our Supreme, it was in His hands. I only asked Him for guidance, strength, and peace for my son. I am sure our Father is doing the same with you and your family. I will keep you, your family, and husband in my prayers. Keep us posted. So you are from Burque, eh? I have been to the Sandia Mts. crest lots of times! God bless!

Irma
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hello Elaine. Welcome here but so sorry you have to be with us. It is hard to be specific to your question because so many cases are different but generally speaking, most people with bulbar ALS will pass on before they are totally paralysed. I hope you won't be upset by my honesty but with a FVC of 30% that is not a good capacity. Cherish each day you have together.
AL.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi again Elaine- I wish I'd read this before responding to your other thread about how you've had to cut back on work and $ is therefore tight. If his capacity is compromised you guys may qualify for additional help. In some states, Hospice will come in to help a couple of hours a day, or your area might have other resources. Call the social worker at your ALS of MD clinic to see if they can help. :-D
 
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