Status
Not open for further replies.

Palmbeach

New member
Joined
Oct 2, 2009
Messages
7
Reason
CALS
Diagnosis
05/2007
Country
Uni
State
Ohio
City
Middleburg Heights
My husband is 66 years old and was diagnosed 2-1/2 years ago. He can no longer use his hands or arms, can not swallow or speak. He can move his legs but cannot stand. Most of the time they are stiff or he has spasms in his feet. I get him up three times a day and he is in his wheelchair for 2 hour periods each time. He has a peg tube since last June. He had never been sick in his life previous to this. My problem is I am getting worn out physically even though I have nursing help at night (it started 2 months ago.) He calls me when he is in bed and chair constantly every 20-45 minutes for re-positioning, suctioning, wiping his face and eyes etc. This occurs at night also but then he usually calls in 1-1/2 to 2 hour intervals. I try to put myself in his place and do understand how horrible it is not to be able to even scratch you own nose if needed but I sometimes think he is just calling to me to make sure I can hear him or that I am close by. Lifting him and transfering him has become very difficult for me. I am 62 years old and had breast cancer 7 years ago. Major surgery which left my arms and chest muscles weak. I want to do everything I can for him but I am getting to the point that some days I cry for him and some days I cry for me. Then guilt sets in and it is an emotional roller coaster. He does not want me to go out at all. When I have to, he tells me hurry up and get back. How do all of you cope with this and is this common in this disease to be so demanding with no break? Sometimes when he lays down, I ask him to just give me 45 minutes without calling me and let me rest but he can't do it. I have tried explaining to him that I must stay healthy to care for him but it doesn't seem to matter. Any information would be helpful. We have tried several meds to help him relax but nothing seems to work. Bev
 

Dave C

Active member
Joined
Oct 20, 2009
Messages
63
Reason
PALS
Diagnosis
03/2009
Country
US
State
Illinois
City
Lindenhurst
Bev, sorry to hear of the challenges. I have had similar challenges with my wife needing constant suctioning. I have been on Lexapro for anxiety and so has Jen. I was also able to enlist a couple of family members to spend two nights a week with her so i can catch up on sleep. Sorry it isnt more helpful and good luck.
 

cris

Distinguished member
Joined
Apr 7, 2008
Messages
214
Diagnosis
12/2006
Country
US
State
illinois
City
Tiskilwa
Bev, I'm sorry to hear you're having these issues. Yes what you are experiencing is quite normal, or at least from what I hear it is). I have gone so far as to tell my hubby I would ignore him if he woke me up one more time. That was a really bad night. I lost count at 8 times in a 6 1/2 hrs time.

Can you get a caregiver to come in a couple hrs a week. Not really cause you need to run errands or anything special. Just so YOU can have a little down time. Lunch w/ a friend, or book?! He may not like it but he has to understand that you need some time too.


I will keep you in our prayers. Hoping for a little peace for you
 

beverly rees

Active member
Joined
Nov 2, 2008
Messages
85
Reason
Lost a loved one
Country
US
State
ca
City
portola valley
Hi Bev,
Some sugestions I have gotten from our support group is to make a list of family and friend's that have offerred help. Determine what you need done and which person on that list has the skills you need to do that task. Ask each individual if they could do that task for you maybe a few hours a week or maybe every other week but get a commitment so you can plan your time away. Also, if you belong to a church they provide people to come on a regular basis for respite care. Having someone come to your home and stay with your husband for a few hours while you get out of the house on a regular basis and do something you like to do would be so beneficial to you and your husband. Also, perhaps you could get a social worker to come into your home and explain to your husband the importance of you getting away on a regular basis so you will maintain your health and be able to take care of him.

Hope this helps. Bev
 

silasbaby

New member
Joined
Oct 30, 2008
Messages
6
Reason
CALS
Diagnosis
11/2008
Country
US
State
Indiana
City
Mooresville
Hi Bev:

Going thru similar situation here at my house. My husband 55yrs- was diagnosed with ALS Nov 08. Actual symptoms started August 07. My husbank ( Mike) is confined to bed. He cant move, has feeding tube and is on hospice care at this point. I do have help here at this house with him and I am still totally exhausted. I am trying to work during the day, then I have the night shift with him. I am lucky if I get 3 hrs sleep a night due to moving his legs or hands- same things that you are doing. Hospice has him on pretty strong night meds, but he has built up a tolerance. Instead of his voice calling for me, he has a Tobi voice generator- I bet there must be 1,000 things he had pre-recorded on that thing. I try to have alot of patience with him, I hate seeing him this way. IF it were me, he would be helping and not saying a word. We have not found a solution to this problem yet. The only thing I can tell you is that you need to get out of the house to have some time to yourself. I can get out during the day for work. Do you have any family members or friends that could spend some time with him so that you could get out of the house? Have you checked on any lifts yet to assist you in getting him up?
Take care, you are not alone with this problem.
Julie
 

duplinwino

Distinguished member
Joined
Mar 14, 2007
Messages
101
Reason
Loved one DX
Diagnosis
N/A
Country
US
State
NC
City
Pittsboro
We're in the same boat Bev, though we're much younger (33) and I'm most likely physically stronger, I'm exhausted and my body aches on a daily basis. I work full time and have a 10 year old. Thankfully I am blessed to have family nearby but the mornings, evening and night time are all me and I feel like I'm on call to scratch an itch, wipe his nose, get a drink, fetch something, reposition some part of his body, feed him, bathe him, and transfer him (the lift we have is another story I'm angry about, so right now I do all transfers on my back). I can't start on something in the house without being beckoned. If I'm in another room out of eyesight, I hear "whatcha doing baby?" For goodness sake, I'M PEEING! ;)

I probably sound like a horrible person, but I think the worst part for me is the resentment that has built these past three years. Whenever family is around, he still asks me for things, he won't ask them. He doesn't understand why mom does our laundry. He doesn't understand why I ask my neighbor for help with something that involves mechanical skills that I don't have. He doesn't understand why I say "I need a break" and want to go away or go out or send him with his family somewhere without me (he's upset with me because I'm sending him off with his brother this weekend instead of going with him).

Anyway, about two weeks ago I literally lost it, mentally and physically, broke down at work crying hysterically. I emailed ALL of his family that day that I HAD. TO. HAVE. HELP, whether he liked it or not. I had abided by his wishes to not have anyone else take care of him up to this point but I couldn't accept that anymore. They came running and we all sat down to come up with a plan. At this point, they will stay over a few nights a week and they will sleep in the bedroom with him and I will go upstairs for a full nights rest. When there they will help with showering, dressing, and feeding. DH isn't thrilled about any of it but I think he realizes I'm at my breaking point and was ready to throw my hands up and walk away (I never could, but I was close!)

If you don't have family or close friends nearby, I would look into getting more help during the day. If insurance won't cover it, ALSA has a respite grant to cover such things. I'm looking into that as I type because Medicare apparently won't cover a personal aide if there's not a skilled nursing need (or so we're being told).

Long story short, you're going to wear yourself out and need someone to take care of you, then what will he do?! The guilt is overwhelming, I agree, but you're a person too, you have needs, you have wants, you should have a life outside of caring for him and you need to take care of yourself in every way you can right now.
 

Palmbeach

New member
Joined
Oct 2, 2009
Messages
7
Reason
CALS
Diagnosis
05/2007
Country
Uni
State
Ohio
City
Middleburg Heights
Thanks to everyone for your wonderful advice. To duplinwino: You made me laugh with the "peeing" incident because I have had the same experience. I work just three hours a day and find it extremely difficult, this is the hardest thing I have ever done in my life, it tops my own cancer, taking care of parents and anything else I have experienced. I have been with my husband 40 years and I find that the resentment creeps in some days. Some days when I get home after working I don't want to come in the house and start the day again. I made him a promise to keep him at home and I will keep that promise. I hope and pray that the good Lord gives me the strength to do it. I have decided to take a month leave of absence from work to give myself a break, even tho that is my away time, my body is getting so tired. My doctor warned me to take care of myself or I would be in the hospital and then were would we be. It helps to hear from all of you and know that I am not alone in this. Thanks again. Bev
 

cukita99

Distinguished member
Joined
Jun 12, 2007
Messages
361
Reason
PALS
Country
US
State
tx
City
el paso
bev, im the person with als, but i try not to take my caregiver for granted even thou i pay her out of pocket. if i get an itch, i ignore it, it goes away. i cant do much but i learn to be very patient. i have a lady full time m-f. on fridays she leaves at 4pm. my son takes over. he isnt very good at it but i cant complain. i sometimes tell him to go out with friends but he wont. i usually can go up to 4 hours not needing the bathroom, and i dont go all night. i sit on my wheelchair and in front of tv n computer and i just keep myself busy. i just hate to bother people unless necessary. your husband doesnt know how lucky he is to have you.
 

Palmbeach

New member
Joined
Oct 2, 2009
Messages
7
Reason
CALS
Diagnosis
05/2007
Country
Uni
State
Ohio
City
Middleburg Heights
Cukita99: Thank you for your view on the situation. My husband was there for me during my surgery and 6 months of chemo however there were days immediately following surgery when he would be out in the garage doing things and I would sit there not able to move my arms and wish he would come in and offer to make me a sandwich or something. I think maybe men are just not as sensitive to the needs of others. Women are born caregivers. You sound like a very caring person and Bless you for being so patient and thinking of others. I am glad your son is there for you, I am sure his presence alone is a comfort. I know what you mean about not wanting to bother people, I feel the same way about asking for help. Thanks again and God Bless you. Bev
 

Pidge

Active member
Joined
Sep 12, 2009
Messages
99
Reason
Loved one DX
Diagnosis
08/2009
Country
US
State
OH
City
Alliance
Bev, I have worked as a caregiver most of my life although this isn's ALS related these stories reminded me of a client I once had. I am sure she has long passed so I will share her story. I was her inhome aid & her son was her full time caregiver he could not step out of the house without her going crazy tapping on the windows to get his attention & such. When I first started working for them the only thing her son would do was go sit in the lawn afraid to go to far away that his mom would have a anxiety attack, so over a period of time I reasured him it was safe to go do whatever he needed I could handle things & slowly both their trust was won over. I really grew to like this woman although she was very fearful of everything she was so frightened that they slept in the living room at night her on one sofa & her son on another & she would cry out often to be assured her son was still there. So one day I come for my regular visit & mom has a black eye? Well evidently she was screeching in the night & son threw his shoe at her not meaning to do harm ooops. I have to report this to my director & explained the situation that I was sure it was accidental no harm was meant. It was quite comical anyway the lady in my story her last name was Fear & I will never forget those two what a riot. So anytime you can get some help or get out & get a break take it & yes do somthing for yourself & don't feel guilty your husband knows you love him. Take Care & Hang in There
 

Gelthling

Distinguished member
Joined
Apr 7, 2009
Messages
109
Reason
Loved one DX
Diagnosis
0/2009
Country
AUS
State
NSW
City
Sydney
My mum was like that, my dad couldn't even go outside for any longer than ten minutes without her ringing the bell. He'd be inside and as soon as he'd sit down she would want something. One day he fell asleep on the lounge in front of her, and she messaged me because she wanted to go to the toilet and he couldn't hear the bell because he was that tired! We finally had to get him respite care so he could have a day or two to himself because she was relentless. She was very upset, as even if a carer came for an hour, she would hold off doing anything until dad was back to do things for her, and even would secretly give him the toilet signal (her hands in a T sign) behind the carers back to try and get dad to take her rather than the carer! She was relentless!

He had the respite and he went back and could go a few more days before getting angry again with her. He took care of her for 3months (They have been separated for 10 years and she lived by herself so he came back t care for her...My HERO), and it felt like three years, but in the end he did what he could for mum, but learnt he needed the break so he could take care of mum!

Best wishes for your challenges ;)
 

cris

Distinguished member
Joined
Apr 7, 2008
Messages
214
Diagnosis
12/2006
Country
US
State
illinois
City
Tiskilwa
Oh Thank You Guys! I have felt so guilty for so long, because Earl's constant needs. I get so frustrated some times.To hear you guys saying the same things and having the same frustrations is good.

Duplinwino..I can so relate to the 'peeing', or trying to do some thing in the house and him calling...ugh. We are also of an age..Earl and I are both 36.

Pidge..I loved the story. You have to laugh sometimes.
 

Pidge

Active member
Joined
Sep 12, 2009
Messages
99
Reason
Loved one DX
Diagnosis
08/2009
Country
US
State
OH
City
Alliance
Laughter is key & I find somtimes the things that really upset us at times are some of the things we can look back & snicker about. This same woman that I was caring for had long stringy oily hair & would not let me wash it for fear she would get pneumonia so 1 day I finally talked her into washing her hair promising her she would not get sick. After I did her hair I prayed & prayed that she did not come down w/ somthing Thank God she stayed healthy. I would hate to have killed somone by just washing their hair. Pidge
 

TRLESH

Member
Joined
Jun 6, 2008
Messages
26
Reason
CALS
Country
US
State
Hawaii
City
Kapolei
Yes, reading these stories helps me understand that my mom is not the exception, but in good company. I've been caring full time for my mom for 1.5 years. She was diagnosed in May 2008 and moved in with me in June 08. I'm not sure if I am thankful I have no husband or kids to take care of as well, but that also means I have no help either. My brother lives in CA and we live in Hawaii. If it wasn't for the insurance policy mom took out five years ago for long term care I know I wouldn't be able to do this. They provide caregivers six days a week for five hours at a time. Mom can walk with assist but her arms are useless. We use an ABC board to communicate but I think her hands are starting to stiffen up and it is harder for her to spell out words. To me...she is a very particular person. Position in bed has to be right, no lumps or wrinkles. I get her out of bed three times a day, massage her back each time, apply witch hazel and powder to keep bed sores away. I wash her face and brush her teeth morning and night. Blow the nose, wipe the chin, suction her 50 times a day it seems. Powder the legs at night, tie a soft cloth around her right wrist at night so it doesn't fall off the bed during the night. Give her nasal spray and mouth spray at night. She has glacoma so there are eye drops twice a day. Four bathroom breaks which she can walk to but can't wipe. Two and a half hours a night in her wheelchair watching tv in the evenings. (there goes the bell...be right back). Vent tube has to be just right and trach suctioned even when nothing comes out. We both take a two hour nap at 3pm but some days she wakes me up more than once. I get up at 6am to do whatever work I can and the rest of the day is running errands for her supplies or giving her a shower (twice a week). Itch here, scratch there. Today I had no caregiver because it was Sunday. Was looking forward to watching the Vikings/Saints game. Mom watched first half with me (with me getting up every 10 mins to either feed her, wipe her, suction her...ect. Well...three o'clock rolled around and the game was still on. She wanted me to stay in the room and watch it with her weather she was awake or not. I got frustrated with her spelling because the game was good so I told her I was going in the other room and she was taking a nap. I know if I'm there, she'll bug me...I have to leave physically to even stand a chance! As I walked out of her room I called back..."only ring your bell if you are dying". Amazing....I watched her on the baby monitor and she went right to sleep and didn't ring her bell once. It was heaven to sit on the couch for two hours and watch a football game. I did end up falling asleep myself...but no interruptions this time. I guess I know I don't have to get mad for her to get a point I want to make...but some days I have to remind her that she has ALS and not Alzheimers.
 

indigosd

Very helpful member
Joined
Jun 22, 2009
Messages
1,784
Reason
Lost a loved one
Diagnosis
07/2009
Country
oz
State
oz
City
RURAL
oh....I can sooooo identify and we are not at the LOCKED IN stage yet :0 At least I know that I am in great company :] hugs
 
Status
Not open for further replies.
Top