I'm new & have a question

[ordinarygirl]

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]

Hi Ordinary girl,so sorry that you have to be here under these circumstances.ALS is such a horrible dx 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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.

[Mary Helen Barr]

Believe it or not, my memories are NOT AT ALL horrible. I'm so glad that I was able to help. Sure, it was difficult, but I have a supportive husband and teenaged kids. Others would say " I would never have my daughter doing what you are doing". Well, then I say that's a shame. I'm sure my father never thought his daughter would be doing the things I was doing, but really, it did not give me bad memories. I wished while I was doing all the caregiving that I had more help, but I was still glad to be able to be the one. My father had total confidence in me. I was the only one able to move him. Others either dropped him, or were completely unable to move him. For about a year, the only time he ever was moved was when I was there every morning. Even the professionals were unable to do it. I didn't understand that, but that's the way it was.

The caregiver develops a special relationship with the PALS that others couldn't understand. I still have people telling me how stubborn my dad was in not being willing to go to a home. I disagree. If my dad had WANTED to go to a home, that would have been different, and we would have gone that route. However, it was so important for him to be at home, so I thought it was important, too. I feel like it was a gift. He's been gone for one month, and I wish I could still take care of him. While it was going on, I wanted it to be over, but now that it is over.....

Anyway, don't let the fear of bad memories for you family keep you from accepting their help if they'll give it. I don't have a single bad thought of unpleasant duties that I had to do--just of being able to help my dad.

[Icanmanz]

Mary Helen all I can say is you are a genius. May God bless you, for being a CAL with a big heart. Posts like yours make my day, and I keep a little smile now and then. Thank you so much for sharing such a wonderful post. Again, God bless. May your sweet Dad rest in peace.

Irma

[quadbliss]

Hi ilgal,

I used to think the same way you do. Of course, every PALS and their family dynamic is different, but I sat down with my wife (many years ago) and had a heart to heart about this subject. I was relieved to learn that she loved me very much, and was not ready to lose me. She was willing to do whatever it took to keep me living as long as I was happy.

I also make an effort to be pleasant, and always emanate good energy. In this way, I can contribute to every situation in a positive way. I meditate daily to accomplish this. One side-effect of the meditation is that I am in a nearly constant state of inner peace.:-D

Mike

[Lorie]

thank you Irma for the nice thoughts. I am dedicated to Tim and all with ALS. I couldn't imagine having this disease and not having somebody that is Caring and Loving. My Dad died of Diabetes related illness. My Uncle died of cancer a few years ago and I was the only one there for him till death, I was there. I know he loved me for it. My brother-In-Law and Nephew died of Heart disease. This all was within a few years. And then Tim has ALS! But there is no Cure, we know. All of the others have Treatment and Hope.

We have Faith, Love, Support and each other. We all want Hope and a Cure for ALS.


I takes a Remarkable person to do be a Care Giver and a Advocate. We are not perfect, We do get tired. We get Depressed and Emotional. What I here from Tim the most is. Thank you, if I could do it my self I would. I know he would. And he would do it for me.

As we deal someway with this Horrrible Disease, I have to find something good out of it. Thats why I am involved with the ALS Assoc. and MDA. They are of great help to us. I have to channell my emotions in to something good. I want to help people, not just Tim, because I know we are not alone. I will be participating in an MDA meeting tomorrow night. Instead of complaining I want our voice heard and to be able to participate in doing something about it.

Lorie

[ordinarygirl]

I hope everyone understands that I love my mom so much & am thankful that I've been able to help take care of her. Sometimes I am an emotional mess because of all the stress & I felt I could vent here. I know many of you understand & I'm glad to find a place to let it out.

I hope it didn't sound like I just want Mom to die. It's just that I know how miserable she is & I'm ready for her suffering to be over. The stress can sometimes be overwhelming, but I wouldn't want her to be anywhere but home with her family taking care of her.

Mary, I hope you can find peace. I know that I'll feel the same way when Mom is gone. I'm sure your father knew how much you loved him & was so proud of you for taking care of him.

Al, thank you for your post. I try to put myself in her position & I do have great compassion for her, but I let my impatient human nature take over at times. It's helpful to hear the other side's perspective & it makes complete sense. I'm going to try harder to not get frustrated with her.

Igal, please don't let my frustration make you think you'll be a burden. My mom never wanted to feel like she is & I have always told her that she is not a burden. This disease is a burden to her & she didn't choose it. We all love her & that's why we are taking care of her. It's incredibly hard to care for her at this point, but I do think her personality plays a great part in her being so demanding. She is having to learn patience with us as we learn to be patient with her.

Thanks to all of you who have posted. It helps to know others have felt the same. I feel guilty sometimes for feeling the way I do. I really think the end is near & I don't want to have any regrets when she's gone.

[Icanmanz]

Hi ordinary, I just read your post. I had to read it more than once. It brought me to tears, really. We all know you love your mom, and I really do know how badly it hurts to watch them change. It breaks your heart. When my son was ill, I spent many a sleepless night. I'd go to bed crying, and wake up crying. It was so painful. My sons (it was sons then), and my husband begged me to go to the doc, and I refused. How could I pop them anti depressants, and pretend that everything was alright? Deep down I knew that my son was dying a slow horrible death. 15 months of pure hell for him, and for me, too. I hated that damn ALS, and I still do. I just could not allow myself to walk around like a robot, pretending. I am sorry, but that's not me.

I wish I could be of some help to you, but I just cannot think of the right words. Just love your mom, tell her you love her, hold her, give her a little kiss now and then. You see, when my son passed, it happened so unexpectedly. I thought he was going to be around a little longer, but it did not happen that way. I would go in his room to check on him, if he was awake, I used to bend, and kiss him on the forehead, smooth his hair, expressed my love for him, and I would pray beside him. Something told me the end was coming, but I did not know when. I really feel for you, may God help you through this, and amy He make your mom's departure peaceful. He will take care of you, and your mom, trust Him. Take care dear, and God bless. Keep us posted.

Irma

[CindyM]

I hope everyone understands that I love my mom so much & am thankful that I've been able to help take care of her.

We understand. You love comes shining through your posts. It is just that ALS puts everybody in a bad situation. I am glad that both PALS abnd CALS feel free to vent aroudn here.

[MtPockets]

I just wanted to say I am so proud of you and all the stories you have shared with us. In this day and age in which we live there are still people who love and give of themselves beyond imagination. In a world where all we hear about on the news or in the papers is the negative things about our society in which we live, THERE ARE ANGELS AMONG US. You.......http://i160.photobucket.com/albums/t172/ShakeyMarble/Christian/Angels.gif

God Bless
Capt AL

And you are the hand of God extended
http://i160.photobucket.com/albums/t172/ShakeyMarble/Christian/handofgod.jpg

[ordinarygirl]

Irma & Al, thanks so much for your sweet comments. It truly means a lot to have people who understand.

[jdale949]

Dear ordinary girl,
My mom also is in her last stages of ALS. There was a time a few months ago that she seemed to be needy but it didn't last very long. She has been an excellent patient considering her circumstances. Still says thank you when you do things for her but it is more of a grunt now. She still smiles because that is basically all she can move. So I haven't had to deal with a lot of demands as you. I know it is hard though. I have had to walk into the other room and have a good cry then I would come back and go at it again.
Do not feel bad for wanting this to be over. No one likes to see someone they love go through this. I feel the same way about my mom. I feel like if she can't be cured then please Lord take her now so she can be at peace. I would rather suffer her loss than for her to suffer this disease anymore. She was always such an independent and active woman. She won an Idaho beauty pagent, she sang in 3 different languages, and she was a director of social services for many years not to mention a devoted wife and mother to 5 children and 2 foster children. But besides all that, just like all our mom's, she was just a good person.
Please keep in touch because it sounds like our situations are pretty parallel.

[Gina]

Hello,to all i have just read this entire thread and i am just so overwhelmed by the honesty,beauty,loving nature,acceptance and guidance .....i could go on and on....I dont believe thier could be another group anywhere that could be as wonderfull as the people on this forum........God Bless each and every one of you ......AL & Cindy thier must be some secret magic formula that you are using because you have nutured this forum to become one of the most peacefull places on earth to be!!!!!!!!.....Gina

[CindyM]

thier must be some secret magic formula that you are using because you have nutured this forum to become one of the most peacefull places on earth to be!!!!!!!!.....

Thank you Gina. This is the goal to which we aspire! It is not always easy. Sickness, and coping with sickness, makes some folks strike out at others. It is sad when that happens but unavoidable, I guess, human nature being what it is. Our "success" has more to do with members like you who understand that it is OK to vent and equally important to support each other.

[Edith]

I just read through this thread and found myself in what you people were saying. My mother has ALS and it is quite advanced. My brothers and sisters have taken care of her mostly because I live in another town, but I have been their relief care quite a few times so I can so relate to what you are saying about how hard it is to watch someone go through what my mom has had to deal with. Yet she has accepted it all with such grace. The only part she really had a hard time accepting was when she realized that she was not going to be able to speak. She was really frightened and now gets so frustrated and cries when we do not understand what she is trying to communicate to us. God, how I ache to hear her voice or feel her arms around me. When I would visit her before she got sick, we would always hug and kiss goodbye. I remember the first time I put my cheek to her lips and realized that she could not kiss me goodbye. We would call each other every day and talk for hours. The first time I got my phone bill and there were no long distance calls, I cried and sobbed. I visited with her day before yesterday and she spelled out that she was so tired of this, and yesterday she "told" my brother that she wished she could die. I love her with my whole heart, but if she passed away tonight, I would be happy for her because she does not want to go on like this. And yet I wake in the night with that awful panic that this is really happening to her and I can't bear the thought of her not being there.

[Paty]

As some of you know, I lost my husband to A.L.S. two weeks ago (tomorrow), I will never regret taking care of him for two and a half yrs. the late six month's we spent at the hospital after he having a traqueostomy and gastrostomy (neither of which he wanted at the beginning), when he started gasping for air, the night of June 30th, my son being a doctor told him and me that we had to take him to the hospital for these procedures; at the start he was refusing but as he kept on having problems to breath he asked us to call an ambulance.

Two days after TQT was done and was connected to a ventilator he told us (using our usual alphabet). that this had been a mistake, down here in Mexico there is no such thing as LIVING WILL, (although it was just passed by D.F. Congress Men and it was approved at our capital), though none of our states have gone through this, if you do such a thing as to disconnect someone of the ventilator who has not been declared with(brain death), you go to jail.

Sometimes it was exhausting, we lived inside our house, me going out only to buy groceries, (across the border, to Calexico, Cal.) I didn't get much help, since my only family are my son and daugher and their spouses, the four of them working; so could only get help from my son to bathe him when he could no longer move or to sit him on his wheelchair; here in Mexico we don't have any such thing as ALS or MDA Associations, so there is very little knowledge of A.L.S.

There's so much that I have on my mind and cannot put into words; what I can tell everybody here is TO BE THERE FOR YOUR PAL, NO MATTER HOW YOU FEEL, THE TIREDNESS, THE BACKPAIN WHEN YOU HAVE TO CARRY HIM, TO HAVE YOUR HEART BROKEN KNOWING THERE IS NOTHING YOU CAN DO FOR HIM.

I THINK NO HUMAN BEING DESERVES THIS DREADFUL AND HORRIBLE SICKNESS, MAYBE I AM WRONG, THERE ARE OTHER DISEASES SUCH AS CANCER AND SOME OF YOU I KNOW HAVE HAD EXPERIENCES WITH THEM.

FORGIVE ME IF I DIDN'T MAKE MYSELF CLEAR, MAYBE MY ENGLISH ISN'T AS GOOD AS I SOMETIMES THINK IT IS.

MY PRAYERS WILL ALWAYS BE IN MY HEART FOR PALS, CALS AND THEIR FAMILIES AND FOR THOSE ALS RESEARCHERS (LIKE POPS FATHER), WHO ARE TRYING TO FIND A CURE.

WITH LOVE,

PATY
CALS TO LATE HUSBAND JORGE
BAJA CALIFORNIA, MEXICO

[nspaul]

Hi Ordinary Girl,

My father has gone thru the same things. He was hard to satisfy but our MD prescrived an antidepressent and it has helped a great deal. He is quieter and less demanding. Unfortunately i don't remember what is was but my mother is better able to care for him and he is calmer. I understand she does not want meds for religious beliefs, has she reconsidered or have you thought about it. Regardless, I hope your faith sees you through the hard times ahead. It will not be easy. My heart goes out to you, and I'll pray for you. It is not easy being a caregiver and watching someone you love fail. I also hope at times that things will not drag on. My father never wanted to be like this and he is suffering his loss of independence and dignity.

Take Care
Paul

[Susan_AU_08]

Dear Ordinary Girl,

Your words echoed my own thoughts not so long ago, I was so exhausted I thought I would die on my feet.. but can I please share something with you.. when they're gone they're gone forever.

What you are experiencing may well be the hardest thing you'll ever do in your life but it will end, and you will be here with your thoughts. She's not testing your patience, you're tired. I used to tell my mother I loved her every day, I never wanted her to go, not ever, but at the end I did want it to be over.. there's a difference.

She never wanted to be a prisoner in her own body and I never wanted to be a nurse, but I loved my mother and she loved me and we did our best in our new roles together. It wasn't a rosy path, it was a scary crash course in learning new things and working harder only to see her continually decline. It was frustrating in so many ways and we felt deprived of so many things, but we had our moments, she giggled when the syringe popped out of the feeding tube because I didn't push it in far enough, and sprayed us both with formula, she laughed at the bruises on my legs from walking into all the equipment, she would touch my hand, or poke me if I looked sad... I'd return this favour by tickling her... sometimes I'd threaten to get her drunk by pouring alcohol into her peg (I never would - neither of us drank alcohol, but the idea made us both laugh), sometimes she would kick me when I never saw it coming and I'd remind her I could have her locked up for that as child abuse is an offence, she'd look at me with a cheeky expression... even when the time came when I could no longer understand what she was saying, we never stopped communicating.

Three days before she died looked at me, pointed to her herself, drew a love heart in the air and then pointed at me with her atrophied hand.. she told me she loved me, no notepad, no speech, but with more meaning than words. These are the memories I cherish if I have to remember anything of those dark times, and everything else I remember is the time before diagnosis, so ilgal, if you are reading this, please don't ever feel you are a burden, the only burden is the weight of having your loved one suffer from an illness with no cure, it is never, ever your loved one themself.

I wish all PALS and their CALS many of these small moments in time to help carry you through the days ahead.

[MtPockets]

I sure am not a Doctor, but my Doctor has me on 30mg Cymbalta one in the morning and one at night. It helps with the mood swings, depression, etc. The only thing I notice from it is I am sleepy a lot more than I use to be before I took this medicine.

I use to just take it just at night to help me sleep, but requested that he increase the dosage to help me overcome the pity parties I use to have that no one wanted to come to. :-D It works better now to keep me in more of a stable mood.

God Bless
Capt AL

[Icanmanz]

Susan, thank you very much for such a top notch post. You know, as I was reading your post, I was so pleased to hear that there are people out there that over look the burden, the hard work, the everything that is brought upon us by this dreadful disease, as it strikes home. I, too, like you never for a moment thought that my son's caretaking was a burden to me, nor felt deprived of things that I could not do for myself because I became his caretaker. Like you, I felt like I wanted for my son to remain with us, but could not stand to see him suffer, and I knew that his only peace would be when he would tell us good bye forever. May God bless you for being such a wonderful caregiver, and I am sure that when your loved one left, you were left with peace in your heart, because you never showed impatience before your loved one as you were caring for him/her. That makes a BIG difference. God bless!

Irma

[CindyM]

Well, we come from a family where we tend to express what we are feeling, and sometimes impatience is a natural part of life when you are overworked and running on empty, so to speak. So we just acknowledge the emotions and then forgive and forget. In a perfect world, we’d be able to get a little extra help from time to time, as full time care for anybody, no matter how beloved, is very demanding.

It does help to remember that it is the illness putting us through the stress, not the patient.

[ordinarygirl]

I haven't checked in for a while & was touched by the new posts. I stayed with mom last night & finally around 4:30 a.m. she stopped asking for things & slept for about an hour. Then a little dozing off & on until I left at 7:00 am. I go back in the morning to spend the day, then I'm up with her again the next night. I'm exhausted, but I know the end is very near. A family friend (who works for a home health agency) listened to mom's chest a week ago. She said the lower part of her lungs is not working, just the upper. She said her guess was maybe 2 weeks. Of course, we don't know that for sure, but her breathing is getting weak. She's not on a ventilator or oxygen. She doesn't want to prolong things. Keep us in your thoughts & prayers.

[Icanmanz]

Hi ordinarygirl! Thank you very much for updating us on your mom's condition. We will certainly keep you and your mom in our prayers. God bless.

Irma

[jimercat]

Hi ordinarygirl,

Hope your mom is comfortable. Wishing you and your family the best with your mom.

[TOUGHTIMES]

I could so relate when I saw your post. We moved in with Mom to care for her last year (her house was more accessible than ours) and I have two boys (8 and 5). My husband is military and deployed overseas. The stress of trying to juggle the needs of caring for her with the needs of 2 boys is exhausting at best. Lately, she has been waking at night, and I am lucky to get 5-6 hours (often broken) of sleep a night. I cannot sleep during the day because the youngest is only in preschool for 3 hours. I constantly struggle between my feelings of it is too much and I cannot do it anymore and the guilt that in time this will pass. I have no idea when that time will come, and I feel guilty sometimes that maybe it would be easier if I did know. You articulated so well my feelings that when we are no longer exhausted that we also will no longer have our Moms. But then at times, I feel that I have already lost her anyway since the women I knew and loved is trapped inside this deteriorating body. My mom is in a wheelchair and can no longer stand. We use the lift to transfer her to the toilet chair and into/out of bed. She has lost the use of most of her left arm and her right is becoming weaker. She can still feed herself somewhat but struggles with swallowing certain items and cannot lift heavy glasses. We found lightweight plastic tumblers that we only fill halfway so that she still has some independence. She requires help with most things throughout the day including wiping hair away from her face. She is sleeping more and more during the day when we have additional caregivers come by the house. She does not want a feeding tube or help with breathing.

Thank you again for articulating so well what I have been feeling lately but afraid to share. It helps me knowing that there are others going through some of the same agonizing issues and that I am not alone.

God Bless!

[pmbenb83]

Hi Toughtimes,
I'm so sorry to hear about your mom and what you both are having to endure. Even though you are exhausted beyond belief, I know your mom appreciates your every sacrifice, and in time, you will feel good knowing you were there for her. My husband and I went through a similar situation exactly one year ago with his mom. She had lung cancer, which spread all over. We stayed with her for most of the final month with a break a day or two a month from his sister. Family dynamics (dysfunction) made it unbearable, so she moved into an assisted living home and 2 weeks later she passed away. If we had only known that it was that close, we would have stuck it out, so that she could have been in her own home. To this day, this is our only regret.

Hopefully, you will be able to get some help from family, friends or a home health care company, just to give you a breather once in a while. With your husband overseas, taking care of your mom, and being a mom to young boys, you need a moment to just soak in a bubble bath or sit in a park and listen to silence. It's time to call in some backup. :)

Take care of yourself!
Pam B in Va

[pmbenb83]

Susan AU 08,
What a wonderful post. I'm glad to hear that through all of this there are times of cheerished moments still to come. A lot of hard work, but still good memories too. Thank you for your inspiration. You really touched my heart. ;)

All my best.
Pam B in Va