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ordinarygirl

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cushing
Hi, my name is Chera & my mom is in the late stages of ALS. Only 2 days ago, we had to resort to diapers because even with her husband & extra help we are unable to move her to the potty chair. She lost use of both arms & hands a while back & her legs are now completely useless. We are unable to understand 95% of what she says. Taking care of her is exhausting, but we have many people who help us, so we are blessed.

My mom is very demanding & asks for things constantly. She doesn't rest at night because she needs a hair moved, her nose scratched, her pillow moved, etc. She is hot when the heater kicks on & needs her sheet off. Then when it goes off, she wants it back on. She wants the fan on, then back off. No exaggeration - most nights she asks for something every 2 minutes. Is this common? I know that not being able to do things for yourself would make you notice every tiny thing, but I feel that she takes it to the extreme. Those of us closest to her (her husband, myself & my sister) get so frustrated with her that we feel like we're going to lose it sometimes. I have a 2-year-old that is with me when I am caring for her & it's all I can do to not have a nervous breakdown. She isn't quite as demanding in the daytime, but still asks for stuff a lot.

We never expected her to last this long & I feel guilty that I am ready for it to be over. I have spent the past 7 months being at her house almost daily & I want my life back. Like I said, we have lots of help, but this is so hard. I love my mom dearly, but her quality of life is gone. It's depressing to think that when my life isn't so stressful, then I'll be without my mom.
 

Gina

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Nov 1, 2007
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CALS
Diagnosis
04/2004
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CA
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ONTARIO
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CAMBRIDGE
Hi Ordinary girl,so sorry that you have to be here under these circumstances.ALS is such a horrible diagnosed for anyone to deal with and i am so sorry that your mothers quality of life has diminished so terribly.Caretaking is such and unbelievably difficult role.My husband is also in the late stages of als.Thank God that he sleeps most nights through the night.Is your mother on any meds for anxiety or depression? She cannot be getting the proper sleep either if she is so restless during the night!I can fully understand your frustration sometimes i can barely get through the day but if i had to be up that often during the night i think i would loose it too.I wish i could suggest something that would help you more.Im sure if you stick around a while their will be lots of others who may be able to help you out a little more.....God bless......Gina
 

nspoc

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CALS
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Olympia Fields
Hi -

Very sorry about your mother. I care for my friend with ALS - and the sleep thing sounds familiar. Although she is the furthest thing from demanding - she cannot do anything for herself except scratch her face - sounds like your mother cannot even do that.

I have a couple of suggestions - have you tried Ambien (or something similar) for sleep? It is well known that pain is worse at night, etc - possibly due to lack of distractions. It is no surprise that your mother's concerns are worse at night.

You say you have a lot of help - that is great. Do you have Hospice? If this is the late stages, hospice could be helpful with these concerns. Medication could make her less physically uncomfortable.

Also- have anti-anxiety medications been recommended? Sometimes all of that activity and neediness at night is due to anxiety.

I would want to know if being "demanding" is new, or was she always demanding. If it is new - then I would say her physical discomforts are great.

I try to imagine my friend being unable to roll over, scratch, adjust a limb just a little bit, adjust the covers, move the pillow, or even turn off her foot warmer. She has even had her ear bent under and I had to fix it for her. She is the most wonderful person I know - and it is heartbreaking to see her like this. I find her needs very believable.

We also are in the diaper stage - actually a relief for her. Now she does not have the anxiety of will we or won't we make it to the commode in time. We did not see that as demeaning - but as a useful accomodation - life is easier for her now.

You have the needs of a child to care for, and you sound exhausted. Maybe you are not the one to help her at night right now. Hospice could help a lot with this problem, and might be a good resource for you to discuss your feelings. Your feelings sound quite normal, but your stress is huge. Sounds like you need time for yourself right now.

Good luck - it was a great idea to seek out this forum - these people are great - and I am sure you will meet with lots of support and good ideas.

Please write back and let us know how you are doing - Beth
 

Thumbs Up

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ca
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Hi, I remember having this problem with my sister. She was going thru change of life and was having constant hot flashes. Fan on and fan off. Could this be what your mother is having? This disease is horrible that people have to go thru this.
 

ordinarygirl

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Thanks to all of you. First of all, my mom is not on any medication due to religious beliefs. While I understand that it makes our situation different, I thought possibly someone could relate. I do believe that her personality plays a part in being so demanding. She was always a very busy, kind of nervous person. I think now that she is unable to do anything for herself, she still wants to stay busy. I have heard that sometimes it is a "control" issue. Now that she has no control, she wants to control us.

I only stay one night a week, so it really isn't as bad as it could be. It's just the ongoing stress is getting to me lately. My husband keeps my little girl when I stay overnight. The days that I'm there is when it's so hard with the 2 of them. I have started asking for help on those days so I'm not alone to care for them.

We haven't contacted hospice, but people from our church have been to great to help that we haven't felt pressed to do so. We just keep thinking it can't be much longer, but she keeps hanging in there.

She is 54, so the hotflashes are definitely playing a part here. Also, she's having a hard time breathing so the fan is needed. But then she's cold. It's a never-ending circle.

I'll keep checking in. I've been looking at the forum for a while, but hesitated joining. I think I've needed to talk to people who understand. My family is just having such a hard time dealing with all of this. It helps to talk to people who know more than we do about the disease.
 

Lorie

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Joined
May 17, 2007
Messages
546
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Loved one DX
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Uni
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Alabama
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Mobile
My Brother Tim

My Brother Tim stays hot. Sweats all the time. Occasionally he will get cool. Even when it was 19 degress here the other night he was hot.

As for my thoughts with your mother not sleeping at night. We have experienced this with Tim. He would want to get up all night. I know why! Think about if you still had your mind and can think normally. But all you had to do was lay there and think about how you know you are going to die. Pretty Miserable and Depressing, You Think?

I figured this out with Tim. And he confirmed it. We got him on Restoril and Ativan. He sleeps a lot better now and only wants up a few times a night.

The time you have with your Mom is only a flash. You will appreciate what you have done for her. And you will finally get to rest. So will she.

Love her Unconditionally. You probably don't realize how much you mean to her.

I have all the respect in the world for Cals for Pals. It is not easy. I know. I will be there for my brother......All The Way!

Lorie
 

ScottishKiwi

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Kerikeri
Hi Ordinary girl,
I can understand what you are going thru' although my husband does sleep quite well most nights. However, some nights I am up 4 or 5 times adjusting his pillow, taking off blankets, putting them back on again, moving his hand etc etc. By morning I am shattered. I always try to get some sleep thru' the day after I have been up half the night - maybe you just have to give in to your one night of deprivation of sleep, go with the flow and make up for it the next day. Sometimes when you accept that you are going to be up half the night, it doesn't seem quite so bad. I also sometimes feel as if I am being controlled with his demands, and sometimes I just leave the room and cry. But I realise that I am just tired then I go and get some sleep. I get guilty for thinking "I wish it were all over" then I tell myself that it is not his fault he got this disease and I would hope someone would look after me if it were me in his position.
I hope things improve for you - but most important, take a step back and get some sleep when you can. I'm sure your mom does appreciate all you and your family do for her, I know my husband does and he certainly doesn't mean to be demanding - sometimes he is just so uncomfortable.
Kind regards,
Ang
 

Icanmanz

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PALS
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Lorie, I have been reading your posts, and you are such a sweetheart to your brother. I am sure God will bless you for that. About you being there for your brother......all the way. I just love to hear that from a CAL. These wonderful folks (Pals) are trapped in a body that is no longer functioning, but their mind is still there. These darlings can no longer turn themselves, no longer scratch if they are itching, they may be dying for a drink of water, but cannot get up to get it. That is why we are CALS. It takes a very special person to become a CAL, and not complain. I know we get tired, but Jesus it's not like we are going to do it forever. These angels' days are numbered, so let's give it our all. I bet Tim is so proud of you, because you speak so fondly of him. God will reward you for what you are doing for your brother. Keep up the good work, sweetie! God bless you!

Irma
 

CindyM

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Hi Ordinary Girl. Thank you for such a brave first post. You've managed to express out loud the real frustrations that caregivers face. I don't have anything to add- the advice to try meds and Hospice is really good advice. If you decide to act on either of those tips, be sure to write back and tell us how it went! Cindy
 

BeccaDC

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Jan 7, 2008
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Maryland
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Fort Washington
Hi Ordinary Girl and others!
I am new to this forum also. My sister-in-law, Linda, was diagnosed with ALS a year ago Thanksgiving. I live a long way away from her, and feel guilty about that, but we come from a HUGE family, and there are a lot of people in her hometown who are able to help her. Although I haven't heard of anything like what you are talking about with your mom, I know that Linda is very demanding of her family and even mean to her husband and children (which is unlike her). She has 2 older sons and 2 younger sons. Is this common? Is it a phase? What can we do to help her and her family? I don't think she is getting any counseling other than speaking with a priest. It seems she spent the first months planning her funeral, and now she just seems so angry! I know that the choices are hers as far as how she wants to handle ALS, but I feel like she isn't making educated decisions. I want to help, but I feel like there isn't much I can do from such a distance. Any suggests for me or that I can give to my family that is closer to her?
 

MtPockets

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Joined
Jun 1, 2006
Messages
1,528
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Diagnosis
05/2006
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Ms
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Gulfport
Another thought to consider is as a person with ALS loses function of their body, they have a lot of time to just think. Some develop a fear of dying alone. So they compensate by asking for little things all the time to make sure the person with them is awake and they are not alone.

I know I have laid awake in my bed for hours listening to my wife snore. I've thought many times what a shock it would be to her to wake up and find me dead. I wish there were some way to ease this for her, but it is all out of our hands. Only God knows the time, place, etc. of when our time here on earth is over. I just pray that somehow it will be in such a way as to not upset her too much.

God Bless
Capt AL
 

Icanmanz

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PALS
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Tomball
Al, I am giving your post a perfect 10. Such a good post. You are such a wonderful person, I am sure that God will be there to help you and your dear wife. I am sure He will pick a time for you to depart while she is awake. Am keeping you and your dear wife in my prayers. God bless.

Irma
 

mrstadpole

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Sep 12, 2007
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California
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Cathderal City
Hi there,

I just posted a thread before reading your post.. I am so glad I am not the only one who thinks.. "when is this all going to end?". I, too, know my life will be less stressful when my dad is gone.. but then, I will be without him. We are damned if we do.. damned if we don't. My dad live with me and we don't have any help. I work full time and so does my husband. I set everything up for my dad before I leave for work in the morning and he's usually in good shape all day because everything is done for him.. when I get home, though.. it's a whole other story. My husband and kids tell me that he is very self sufficient until I get home and then when I get home it is like I am his slave. I don't get it. He has lost almost all use of both legs.. he's in a power w/c now and has lost the complete use of his left hand and speach is just like your mom's.. we are lucky if we understand a couple simple words. I guess what I am trying to say is... you are not alone and I believe your thought and feelings are valid.. but I am curious to see what others think about the neediness and such.. is it just the disease or what? Have a great night.. keep smiling!
 

Mary Helen Barr

Active member
Joined
Mar 6, 2006
Messages
61
Believe me, I was in the same position, too. Less than a week before my father died (12/10), I spent the night with him, and he needed something at least every 10 minutes, if not more often. I really regret being as frustrated as I was at the time. I didn't know he was that close to dying, not that that should make a difference. I took care of him every day for over 2 years. He had ALS for 7 years, but needed daily care for the last 2 or so. Anyway, I did everything for him. I wasn't with him 24 hours, but I was with him many hours every single day. Anyway, I was so mad at God for allowing this to happen to him, and for making me be the only one willing to help. I thought my life would be so much easier and less stressful and busy if I just didn't have to take care of my dad. Well, it's been 4 weeks since he died, and I wish I could still take care of him. After all of my anger and frustration at God, now I wish I could do it for a little longer. Thankfully, I was with him when he took his last breath, and I feel good that my caring for him allowed him to stay home. I don't know if this post was any help, but believe me, I've been where you are. I totally understand. Now that my dad is gone, I don't feel like life is any better for me. Maybe I'm still depressed. I don't feel like doing anything with the extra time I have. Hang in there.
 

ilgal

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Joined
Jul 28, 2007
Messages
83
Reason
PALS
Diagnosis
00/2001
Country
US
State
IL
City
Somewhere
I read this thread and it just about broke my heart. You are all being so honest about how difficult it is to be a caregiver. Bless you all. And do take care of yourselves.

As a PAL I can't say that I'm particularly afraid of dying. My faith leads me to believe in a better afterlife. But I am afraid of being a burden to my family and leaving them with horrible memories of me. Few of us can afford extra help to care for a sick person, so the job falls to the family This is what leads me to think that I will not choose to have a PEG or trach. Maybe I will leave more quickly and the time the people I love so much will have to care for me will be shorter.
 
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