The ups and downs of an ALS caregiver

[ransan]

Hi, I am new here been reading forums and blogs the last couple of days and I wanted to share a bit of my story with ya'll. It starts about 2 1/2 yrs ago, my mom was having trouble with her left arm and hand it she went to doctor (03/2009) and they said it was this and that she had pinched nerves so a few months went by she couldn't use her left arm or hand at all and the right one was starting to do the same as her left one had. She went to doctor again (06/2009) and they sent her to another one and then another. They tested her for MS wasn't thought she may have had a stroke nope then found Herniated disks in her back sent her to surgeon which said she needed Surgery as soon as possible that the disk were pinching the nerves which was causing the problems she was having. So 09/2009 has the surgery said everything went fine and all was good that she would and should recover but the damage that had been done to the nerves may not heal. So she goes back to her doctor for checkup after surgery (not doing any better) could barely walk the doctor said her back was healing and look great but couldn't understand why she was having trouble with walking and such. So went to another doctor 10/2009 due to she could hardly walk and was falling more and more still couldn't use her left arm and right arm still being a bothersome. 11/2009 we got the word it was ALS a week after Thanksgiving. That is a day I will never forget I didn't know whether to cry, be angry or what. By this time she was no longer able to walk without someone holding her. She couldn't shower and bathe herself due to not being able to use her arms and hands. 01/2010 couldn't use her right arm or hand to feed self or anything. 04/2010 speech started getting slurred, still able to swallow just not well. 05/2010 had PEG tube placed.
I have a husband, children and a full time job. I have spent every off day and work days I go over after work and care for her til bedtime. I was the only one to bathe her and keep her meds straight and keep her personnel care done during this whole time she had been unable. I have a sister which rarely ever came around, lived next door and no job I may add. Two step sisters whom my mom raised because they were 2 and 6 when their dad married my mom and their mom had left them. Not much if any help from them. 06/2010 I told my step dad that we needed to get hospice started, he told me he didn’t think we were ready for hospice yet. So I continued on with no breaks any rest any time for myself or my husband and kids. I was asking for help from my sisters which had no free time always had an excuse. 09/2010 I had all I could take was on my last leg and was about to fall apart physically and emotionally. I told my step dad Call and get Hospice started once again he said I don’t think we are ready for them… I lost it and said maybe the WE that is not ready for them may not be but this part of the WE has got to have help I cannot keep going this way. So Hospice started the next week. This was a huge load off me. I still was going over there after work every day but she had been bathed and cleaned to where that was one thing I didn’t have to do it has been great. I have missed a lot of work and still don’t have time for me or anything else.
11/2010 speech is not easy to understand, swallowing very little. 01/2011 can’t understand her, swallowing not much at all, don’t want to be fed through tube, breathing still but not well, uses BiPAC and oxygen much more than before.
I have many friends that have helped me through all of this and my husband has very understood with my absence. I will tell you this is the hardest thing I have ever experience and pray that I don’t have to ever again. I pray that no one has to watch this and we could find a cure or at least a way of slowing down and stopping the progression.
I have days I just want to cry some days I want to scream and snap someone’s head off. But I don’t I love my mom and want to do all I can for her while I still have her.
One thing I would like for everyone to know that one reason as if the ALS is not bad on it’s own but worse is that some of the family daughters and some other family members don’t help nor even come and visit. I don’t want to hear the excuse of I can’t bare to see her like that….heck I can’t either but it would mean so much to her, it hurts her that some don’t come to see her. My mom has always been the strength of the family, friend and caregiver to all, that is why it hurts so bad now that so many of the family she had helped in the past can’t even drop by to say Hi I love you.
I am sorry for such a lengthy story but so much I wanted to share and get out of me.
Thanks to all reading this and I want all to stay strong and know you are in my prayers.

 

[LauraA]

Good Morning,
I can hear the pain in your writing. My heart just breaks for you. My dad has advanced (almost end stage) ALS and I care for him along with hired care but I am an only child w/no other of his relatives around. I cannot imagine having sisters and family that won't help. I have spoken to different people about caring for loved ones and it seems that there are certain people who just CANNOT deal with a sick or dying loved one in their home. Somehow certain people are just not mentally wired for it. As cruel and heartless as it seems, they don't have the coping mechanisms that you have. Hang in there. You will receive so many blessings from your selfless service to your mom. You are not alone....there are soo many people going through what you and your mom are experiencing.

 

[ransan]

Good Morning,
I am sorry about your Dad and you having the load on you too. I am strong most of the time, and I am thankful for I know many have it worse than I but sometimes it is just good to let out our feelings good or bad to feel better and know I will continue on with what I do for that is just how I am and how it is. I really don't know what stage my mom is in from the research I have done she in is the end stages too.
I tell myself everyday that I will have no regrets when the time comes because I know I have done everything in my power to help and take care of my mom.
I wish you well and your Dad through this time in your lives

 

[Jellycat]

Hello Ransan and welcome to the forum. I'm glad you let it out and shared your story. I can't imagine how hard it must be to have siblings who always find a reason to be elsewhere. How hard that must be for your mom who probably only longs for them to drop by. She is blessed to have you and though I hear your tremendous pain (how could it be otherwise?) I hear your commitment to her. You are not going to leave her alone with this, I know.

Like LauraA, I am an only child looking after my mother. My father passed away not long before she became sick (cancer). I daily miss the life I had before I moved in to care for her (and the loved ones I left behind to do so) and at the same time I know I am where I need to be and could not be anywhere else. Still looking for a way to cope with the pain of watching her though...

Your moms onset began the same time as my moms, though in a different place. Echoes too in the doctors suggesting other things than ALS. In our case the first 5 months of slurring went by with the doctor believing she had an allergy.

I am glad hospice are with you now and that your load is shared just a bit. I hope it leaves you free just to hold her hand sometimes and be with her. I know the anger and the brimming over you speak of...have found myself going outside and screaming sometimes, and have even broken a few things. Me who was always described as placid and serene! Still, I'd rather that than laying into someone. And the crying. More since diagnosis than my entire life I think. Still, there are also the good days, and if not days, moments, when I know she is ok, or when she smiles and it makes it all ok.

I doubt you will have any regrets. You are acting out of love. Stay strong.

 

[ransan]

Jellycat,

Thanks for your reply it really helps sharing our feelings and other peoples thoughts. I am sorry to hear of your mom also. You are right I wouldn't have it any other way. I know we will all be blessed oneday for being the people we are. I am blessed already for I have had my mom this long when I think about it my mom lost her mom when she was 5 years old her mother was 33 yrs old and had a brain tumor. So I have beeen blessed to have had my mom longer than some.
Sometimes the pain and hurt is for my mom because I know she would love to see them also just to stop by every now and again would mean more to her than they could ever know.

 

[Jellycat]

Doesn't it just. Glad to meet you online.

You've probably already done this....but is there any way you could tell your siblings that though you know it is hard for them to see her as she is, that she really needs to see them so that she knows they love her, that her seeing them would mean more than they can ever know. Though she's their mum and so will probably always find a way to excuse their absence, actions speak louder than words after all.

My mum has two siblings still alive. Two sisters. One in total denial and too far away to visit anyway and the other scared stiff. The scared stiff one visits and it seems to reassure her when I tell her she doesn't have to do any of the heavy lifting, so to speak, just turn up, stay as long as she is able and tell my mum the news of what's been happening to her. Sometimes she comes out after 10m, unable to be there but most times she is able to stay longer. I confess it has been hard work to get that far, and not terribly well motivated on my part. A dear friend told me early on that if I didn't try and make it happen the sister might blame me after for keeping her away...even though it was her finding it difficult to come along! Extra work I surely didn't need, but then again, hopefully lifegiving for them both. I've learned to value what she can give, especially since there's few others that come at all. Forgive me for suggesting it if that's just not possible in your situation.

I'm glad you've had your mum this long and hope you have her a little while longer. Take care.

 

[Katie C]

Gee Ran.. we should introduce your sisters to my brothers in law. They were big on the "it's just so hard to see him that way" thing. Eventually.. I stopped trying .. it was their loss and one less thing for me to get upset about. They'll have to live with it. I'm very glad you stood up to your step dad and got hospice going. It is a HUGE help. I think many people misunderstand the kinds of help hospice provides the FAMILY!

Hang in there... visit often and vent all you need to!

 

[ransan]

Jellycat, I have asked them to come many of times for mama and to help me. I was sick with a crud that was going around afew months ago and asked my sister to go over there for a couple of days because I was sick and could and didn't need to be around her. Well couldn't do it. I am ok with it I guess now just upsets me sometimes.

 

[ransan]

Katie,

I just don't understand that being a reason how can they think that way really it is hard for everyone but we have to be strong for those we love. You are right they will have to live with it.

 

[Jellycat]

So sorry ransan that they can't step up to the plate. They may live to regret it.

 

[Katie C]

Ran... what I learned early on with this disease is that "why" rarely has an answer and frequently is just a waste of valuable energy. Sorry if that sounds kind of cold... but I tried to save my "whys" for finding out specific things I could do to help Glen. He had to be my focus and the others ... well, not so much.

 

[Miss]

Ran, my husband's progression started in the same way your mother's ALS started. He, too had all of the "pinched nerve, brachial plexus injury, etc." possibilities. Fortunatley, we did not do any surgery. I am my husband's sole caregiver, but I do have a morning CNA to help me get him up, dressed and transferred. My 16 year old helps me get him transferred and to bed at night. I know your exhaustion, your pain and your frustration. My thoughts are with you.

 

[sanderson]

Ran, thank you for caring for your mom, I know you dont know me, but its important I think that caregivers are supported, so thank you I get very upset when I hear folks say" i just cant bear to see him/her suffering, or that way or whatever". Well to those people I say, its not about you! Do you really think the person who is dealing with the disease wants to bear it either? They dont have a choice and must bear it. Those of us who are part of these folks lives have a responsibilty to them and need to put there personal fears and uneasiness aside and be there for our friends and family! I know its a rant and I will get off my soap box know Thank you to all of you who do support your PALs in whatever way you can.
Susan

 

[maureen mccullough]

this is my first time using the internet to reach out to talk about my husbands a l s....thank you....all of you for sharing a supportive message ...i am my husbands sole caregiver...since april 2010 and i am worn out.......i finally asked for help....something i have found hard to do.....but just having someone come in and help for a few hours has helped m e to start to regain my energy.(positive) so i can truly be present to my love, he deserves it.....what a disease...............and yes, family members,i think,do not know what to say....or do for that matter.....and because for the last 10 months,my time has been devoted to caregiving.....i have lost some friends.....i just did not have the energy for them, i am trying to work on balancing this,would appreciate any suggestions.thank you and i really do believe that keeping a gratitude journal....nightly ,helps me stay focused on all that i do have ......one day at a time.....blessings

 

[Tom's Support]

I just had a thought. Mostly because distant friends are afraid of what they might see, or that they may not be able to understand what Tom says to them. What if we CALS were to encourage correspondence from the scared-i-cats like letters, mini photo albums of what they are up to, silly greeting cards? At least this is one way communication, and those who are truly held up by distance might be glad for the opportunity to connect. For those who live next door and cannot get over themselves, maybe not do-able, but at least they have to stop using the excuse that THEY can't bear it. Just a greeting card or photo, come on!