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snugd35

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I'm new to the thread. I guess I just needed to let some things out...please offer any advice.

My grandmother was diagnosed in Jan with ALS. We have suspected for probably two years. She slowly started to lose movement in her arms. Last year she was falling a lot. She no longer can feed or dress herself. She since has start having trouble holding her head up and trouble with her legs where they gave her braces for both. She is full dependent on my grandfather.

I have a friend who's mother had passed in November from ALS so I do know what is to come and I've been trying to prepare myself for it. I knew it would be hard but with the holidays it seems to be getting worse and worse as the time goes on. My friend told me that by the time her mother had passed, yes she was a wreck but the grieving process was different, that you grieve from the day you hear of the diagnosis until the final day. I am extremely close to my grandmother. She is a very religious person and cause of that I find church, one of our many things we've always done together, to be extremely hard. It is because of her that I have as strong of faith as I do. My grandparents and I both we active in the church choir and due to having a small, declining church, we no long have choir. A few of us have missed singing familiar hymns so they have let my grandmother pick a list. Every Sunday we sing a song from the list. Palm and Easter Sunday's hymns were the hardest. Also the though of it possibly being our last together in church or at all. It's so hard for me not to think of what is to come and its hard not to focus on that. I'm trying to spend every chance I can with her, mostly Sundays and if I cant make it to church I still visit. I have more respect and love for than I could every explain. My grandparents helped made me the adult I am today. I would never be where I am now in my faith if it wasn't for them.

It also frustrates me when certain family who isn't around for months try to show up on holidays and try to jump in to help. We have every year since I was little gone to a Mother/Daughter gathering at our church. Certain people jump at the chance to show off to others and help out but on any other day are never around. Every Sunday my father and I help get my grandmother in and out of the car into the wheelchair and into the pew. At the Mother/Daughter gathering I feel like thats a tradition I share with my grandmother and felt like someone was trying to take it over, someone who is never around and never has helped her before. I did feel a little better when someone commented to my mom that I was very good with my grandmother. I would do anything I could for her. I dont always jump to help when my grandpa is around because they two have a routine down and she likes him to help. I try not to step on any toes.

Any advice on how to deal with everything, any is appreciated. Thanks for letting me vent.
 
I'm very sorry about your grandmother.

Sending you hugs! You sound like a wonderful grandchild!

Don't worry about family, as it won't help. Just know you are doing the best you can and that's all that matters!
 
Thank you very much.
 
In a crisis, often the ones we most expect to help fail us.

I am sorry about your grandmother. Your grandfather will never forget the help you give him as this is only going to get harder. My heart goes out to him. I am only 49. The physical demands on the caregiver would be so hard on an older person.
 
I personally didn't expect certain people to help, they would be more help just staying out of the way but yet letting my grandparents know they are there...

They both are in their late 70s. He does so well with her. He does everything for her, feeds, dresses, bathes, everything. I just hope he knows its ok to ask for help and there will be a day that he cant keep doing it alone. They are the type of people it takes a lot to ask for help. I also worry that he keeps his strength up as well...
 
I find that everyone's motivation for helping is different. Some do it to feel good about themselves, some do it out of the genuine kindness and/or faith in their heart.

The only time I try intervene is when I know my wife does not feel comfortable with a particular person. Otherwise, I ignore their motives and take all the help I can get because I know this is only going to get harder. It was not easy to let go at first, but you need to find a way to manage the stress to avoid burnout.

Those are just my thoughts.

PK
my wife was diagnosed 4/2010.
 
My Dad was diagnosed 2/2009, and we are in what I believe are his final days. I can relate to your friends statement about grieving everyday since the diagnosed. Just when I thought it couldn't get worse, ALS takes something else away. God Bless your Grandma and your family.
 
Thank you all for your kind words.

Jillq, I've verry sorry to hear about your father. You and your family will be in my thoughts and prayers.

I swear everyday gets harder and harder to deal with this. I feel like being alone but then I want company, then as soon as I'm with someone I feel like Im suffocating and wanting to be alone. My days are consumed of my thoughts about whats going on. It may go away for awhile but constantly come back. I fight everyday to keep a smile on my face and stay positive. I'm close to breaking down but I don't know what to do. I'm trying to stay strong for myself and my family, yet I just want to fall apart. I also feel stupid and embarrassed when someone asks how things are...why should I have to lie and say fine or ok...when its not ok or fine. I am constantly fighting the thoughts and fears in my head...Every day I seem more and more lost...I hate she has to go through this and I cant do a thing a bout it. she is the strong one as Im ready to fall apart...I'm weak compared to her...
 
ALS doesn't just affect the patient--it affects the entire family, as many serious chronic illnesses do.

As for your emotions when others want to 'be there'--let them--as long as it's something that your grandmother wants--because, to be honest, it's HER wishes that count. If it makes her feel better to think the 'useless' members with her--then that's good for HER. It's hard, but I'd suggest keeping those thoughts to yourself regarding their less than stellar support.

Your grandfather is rather old to be doing so much on his own. It's too bad they don't have someone willing or able to be a live-in caregiver to aid them both with all this. Full-time care is hell on everyone--but even harder on those that are elderly.

If the less than supportive people upset your grandmother by 'showing up' at holiday times--then by all means keep them away!
 
My standard answer when asked how we are - Considering it is just about the worst disease in the world, we're doing okay! Not negative, not positive. Just a statement of fact.
 
Dear Snugd, I'm so sorry you and your Grandma and Grandpa have to go through this. It's just not fair is it. I know you can find the strength to keep smiling for your Grandparents sake. Be patient with the "Johnny Come Lately" types. They just don't know any better. I'll keep you all in my prayers Sweets. You're a good woman.
 
Thanks everyone. Been taking one day at a time. I will continue to be here for my grandparents in any and every way I possibly can. Im slowly starting to realize its ok to break down. But i still feel dumb doing it front of anyone.

I posted a poem the other day on FB and added a description of what it was about. Stating that I had a lot of stuff bouncing around in my head with my grandma having ALS and needed to get it out. The poem was about how I dont get how she can be so strong dealing with this and I'm the one ready to fall apart... A friend who knows my grandma has ALS and again it was stated above the poem, asked if maybe she was missing something and if everything was ok, like she didnt even know my grandma had this disease, because those were powerful words. I dont know how more obvious I could have been. I couldnt respond because I knew it wouldnt be very nice...I feel like I get angry a lot easier...I hate this...

Thanks for all the kind words and support
 
I woul love to read your poem...can you share it? I totally know everything that you are feeling. My response when people ask how Mom is doing is, "She's awesome" because she is. Then, depending on who it is I honestly share how I am. If anyone asks if they can help...I now ALWAYS say yes and give them something to help with. As simple as picking something up at the store for me or just stopping by to visit with Mom. My mother in law is now making some snap back dresses for Mom. I will ask people to pick things up if they are at a particular store that I can't get to. I will often ask them to donate to The ALS Guardian Angels or to purchase our jewelry (which my cousin and I make). In the beginning I would not ask for any help and always turned people down but now I realize that there is always something for anyone to do. Jut take care of yourself too. Know that every day is a gift for all of us.
 
I can share the poem. Sorry this week was rough so Im just now getting a chance to get on here...

Hero

Im fighting back tears

She’s wearing a smile

When she’s been given no hope

She keeps her faith

Im on the verge of breaking down

She gives all her strength to do every day things

The smallest things make her smile

While the same things make me want to cry

I know

Im not ready

Yet she’s had no warning

No say in the matter

But seems fearless

Every day is a constant struggle

For me to get throug ,

Knowing as the days pass,

the worse it gets

Every day is a struggle for her,

in a way words

Couldn’t explain

This woman has had things taken from her

Yet she still stands taller

Than I ever have

Facing this head on

With everything she has

Meanwhile

I would rather run from it

And hide,

Then would it go away,

Instead,

Im fighting to prevent falling apart

My hope is gone

My strength is running thin

Yet my faith

Like hers is stronger than ever

Gaining strength

Day by day

She is MY Hero
 
forgive me...I wrote it as it came to me so its not the best Ive written
 
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