I am not coping very well

[Kim C]

I don't really know where to put this. I am not coping very well at all right now. Mom has gotten worse in the last two months and is nearing the end-stage of this disease. When I'm at work I usually cry most of the day. When I'm at home with her, I alternate between super stressed and surviving. She can't do one single thing for herself, can't speak, has some trouble with eating & drinking, breathing a little worse at night. Nothing here new to any of you, I'm sure.

What I am looking for is suggestions on my coping better. When I get upset, stressed, etc, I know it upsets her. We're doing the best we can. My dad handles it well but I am not. Mom looks like "death warmed over" and again Saturday night said she wanted to die. I hate seeing her this way, so miserable. It is all so unfair.

I work full-time and am still able to walk my puppy twice a day so I do get away from the stree sometimes. Yesterday we had a great day, I talked and made he laugh. Family & church member came to visit and I think she enjoyed it. Puppy make her laugh too. Then last night we had another one of the communicatin road blocks where dad & I just could not figure out what she needed. Then this morning she got up with a swollen and red left eye.

I am not sleeping, feel like I am on the verge of a nervous breakdown.

 

[Ronnie& sissy]

Kim, hate to hear that changes, nothing about this is fair is it.,I'm so sorry. The only thing I can say, is pray! Prayer is bout the only thing we can be sure of, not sure if your a spiritual person or not, but it always helps me. Thankfully I've not been in your position just yet, but the power of prayer is truley amazing, GOD will ease your pain and comfort your mom. I will be praying for you all! Hope better days are coming for you!

 

[Ronnie& sissy]

P.s crying is not bad either! And sometimes, I go outside and let a little war hoop out, lol just make sure the neighbors hearts are in good conditions! Lol

 

[TGB1]

Kim - I feel so sad for u and your parents. You r in my thoughts and prayers every day.
Day by day, that's all any of us can do. Trina

 

[Santa joe]

Kim-we all know exactly how you feel. I can't begin to tell you how many times I ask "Lord give me strength". This is a disease that drains not only the PALS but also the CALS. It is heartbreaking to say the least. I cry in the shower so as my hubby does not see me. I call it "My shower of tears". I try so hard to be strong for him but even the strongest have weak moments. Being there for your Mom is the only thing you can do. We are all going thru the same emotions so don't be afraid to reach out. You will find the forum to be a place of comfort and strength. I'm sorry you had to join us but this is the best place to be.

 

[Atsugi]

Kim. I wholeheartedly recommend you ask a psychiatrist if they have medication to help. It helped me perfectly. I'd be surprised if your mother wasn't already prescribed something to keep her mood from slipping. Use every aid to help.

Try to maximize your sleeping and napping whenever possible. This is incredibly important to mental health.

 

[skipper66]

Kim,
I would strongly recommend your see a psychiatrist to put you on a mild medicine. I really took it hard when my dad was first diagnosed and my doctor has been 100% supportive and even prays for my dad. My mother died 16 years ago of cancer and I felt exactly like you do. I finally asked God to help me get through it. He came through and literally carried me when I couldn't go on anymore. Tell you mother you love her everyday even if she has a day in which she isn't real responsive. Her sub-conscious will pick up on it. Make sure yo tell dad you love him too.
Know we are all hear to listen and we do care. Will be praying for you. Love, Kim

 

[Barbie]

I agree with the medication recommendations. My GP gave me a script for both an anti-anxiety and an anti-depressant. both worked well for me. Talk with your doc about which is best for your situation.

 

[affected]

I would say a psychiatrist or counsellor to really talk about your feelings to and anti depressants. I am certain I could not do all of this without the anti depressants, and my PALS is on some too. I see a counsellor every 2 weeks or so.

Please do seek some help this way, you are trying to cope with one of the worst situations imaginable, this is not something easy that you aren't managing. Remember that and use all the help you can. xxx

 

[tmackenzie]

Hi Kim, I know all too well what you are going through. My mom was diagnosed in July 2012 and she passed away in November 2012. She was 63. I too worked fulltime, live 2 hours away from her. I was fortunate to be able to see her every weekend and a day or two during the weeks. It was very frustrating trying to understand how to help her. I just wanted to ease the feelings she was going through, knowing what she was facing. I was with her for her last 10 days alive. I would give the world so be with her for one more minute...just one more minute even. I was very strong for her when nothing else went right, I was her rock. I would hold her in my lap and let her cry. I would read to her while she slept. I would just sit with her and be there. I don't know where my strength came from, I should have broken down, Lord knows I wanted to. But most importantly, I felt were "her feelings". I never wanted her to see my frustrations, my anger, my sadness. I still honestly don't know how I managed, because I was probably the most upset, hurt, angered person over it - she was my best friend. I do know that when she left us, she knew we'd be alright and she knew how much we loved her. That I am certain of. Cherish this time with her.

 

[Zaphoon]

Hi Kim!
Please know that ALS is a thief! It has stolen your mother's ability to walk, talk, and do the simplest of tasks for herself. It has robbed her of much happiness and has brought on misery like you may never know.

Every little thing you do to make her life a little more comfortable, a little more cheery has gone a long, long way. Sooner than you may know, it will all be over. you will still be here; your mother will not. As difficult as it may seem now, you will be so glad you did all you could while you could while she was still with you.

Blessings on you for all you have done and all you continue to do for your mother.

 

[Amanda81]

Kim, you sound just like me! My mother and I have never seen eye to eye on a lot of things, we just think differently. So we still butt heads a lot, even though we should be spending these precious last moments together in better ways. She was diagnosed December 2012 and we are near the end as well. She is 62, I am 32, and it is all heartbreaking. I can only tell you what I know from my own experiences... #1 - SLEEP! If you can't sleep, get an over the counter sleep aid, some Tylenol PM, or a prescription. Get at least 8 hours per night. Do whatever you have to do to get that. Sleep is your best friend, TRUST ME.

And in no particular order, pray... lean on family and friends... take help when it is offered... scheduled nights "off" and go do something for you... talk to a therapist (some employers have a free employee assistance program that you can call).

Everyone deals with things differently. Just keep it one day at a time. Do what you can in the moment you are in and worry about the rest when it comes about. I told myself right after she was diagnosed that every time I had a bad day, I needed to buck up and get through it because the worst was yet to come. For over a year now, that statement has held true. You just have to be prepared and be as tough as you can and do whatever you can to make her time better. But you aren't a super hero, so don't push yourself to be.

Take care, prayers to you and your family... you can do this, you'll get through it, believe in yourself.

 

[Kim C]

Thanks everyone so very much for your replies & suggestions. I guess the best of which is to simply take one day at a time and not look ahead. It is just so frustrating, like this morning we had a communication block right when I was heading out the door for work. Finally figured out what it was but I left home stressed, feeling so sorry for mom & so disgusted with myself for getting stressed again. I can't even imagine the hell she is living.

I do have access to work counselors, I am taking an OTC sleeping aid, I do pray for help in dealing with this, I do get some exercise. But I still get stressed.

Thanks for your love & support

Kim

 

[affected]

Try not to be too hard on yourself Kim.

We all get stressed dealing with this disease. Sometimes just understanding that this is truly a huge issue to deal with, helps me, as I can acknowledge that I'm not stressing over nothing, of course this is stressful!

Do get to see a professional for yourself - anti depressants will very likely help you sleep better and you could ditch the OTC ones. Counselling of some kind will help you as well, the 2 together are important really. The meds are not a cure, they are just a tool to help you not sink too low. The counselling is another tool to help you learn to deal with this stress.

 

[lgelb]

Without criticizing anyone's beliefs or world view, I am going to represent a minority group that we don't hear from much, who is welcome here as well.

We (speaking for my family of three) do not attribute ALS to any gods, nor are we interested in psychotropics or counseling for various individual reasons. Though I would not describe us as "doing well," [never sure what that means in the context of impending death] we do what we can how we can. That includes less sleep than we are used to. I don't want to minimize the efficacy of rx for those who truly cry all day otherwise or can't function without. One rule of thumb is, if you can still appreciate a beautiful landscape or a good book, you may need perspective more than biochemical intervention. This is mine:

ALS isn't necessarily a catalyst for growing or thriving as a family though it has brought us closer to some of our family and friends (and further from most). It's an adaptation that no one wants or needs to make. My husband's life is mostly audiobooks and TV. Each of our screensavers are photos of what we used to do and see because the past still means something. There is a huge difference between then and now. BUT--

This is our life here and now. It is the life we chose in my case because I married my husband and in our [adult] son's choice to come live with us. The choices we made were the right ones under these circumstances that we did not create and can't change much.

None of us is dead and buried. It is a sunny day. The bedroom blinds are open and a lovely pre-nursing student is doing my quadriplegic husband's ROM exercises while we listen to music. Our cat is nestled in his bed with him (IMHO, a sweet cat is worth a thousand doses or prayers. The rest of the day/night will be much more difficult.

To paraphrase John Lennon and others, eyes wide open, no heaven, no hell, only here in the moment that is ours in which to eke out its possible joys or minimize its pain. And love something.