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Danijela

Senior member
Joined
Dec 3, 2008
Messages
667
Reason
PALS
Diagnosis
11/2008
Country
UK
State
UK
City
Bolton
We had a tough time lately: pneumonia, hospital stay, weight loss, incontinence, inappropriate care package...you know the score.

And once I paused my endless tasks I realised that L was BECOMING ALS. All our conversations and all of our interaction was about ALS and associated issues and needs. It absolutely DOMINATED everything.

This is not how I want to live my life. I would rather have 5 minutes with the old L than 5 years with THIS. I told him so. I asked 'what happened to that guy who loved music, politics, art? Who are you - Mr Body Fluids?' This had some impact as he a/cheered up b/ decided to cut down the ALS talk.

There is also something else I realised about carers and health professionals. For them, giving care (in whatever form, from showering and hoisting to prescribing equipment and asking questions) is IT. The focus. The aim. The task itself is the end goal. For ME, and US - it is just means to an end - which is being as normal as we can be. Way too much focus was on the tasks, with Laurence allowing it to be so. I want Laurence in the wheelchair showered and dressed - not because I care about dressing and showering but because I want us to go out and do Christmas shopping.

Over and out.

Dani
 
Well said, Dani. I know the feeling all too well. The care of a PALS is so time consuming that it's easy to let it define who we are and what our relationship is about. I just keep telling myself "We are not ALS! We are Jim and Serena. Have been for the last 30 years and still are!"

Jim
 
I was so fortunate to have someone in the house every morning to help me get Terry up and dressed to start the day! She would ask him about the plans and activities, not focusing on the task at hand. It never occurred to me how well that set the tone for the day. Thanks for reminding me. I need to call her and thank her for that!
 
THANK YOU DANI! You have said EXACTLY what I have been feeling /experiencing the past few weeks.

Karl has been so needy lately...yet I can't seem to do anything right! He's always telling me how his sister or my sister in law or his brother do this or do that and how wrong I do it.

Forget the fact that I work and drive 10 hours a day, come home and do all the chores + take care of him. He can't understand why I am not standing by his chair ready to give him a drink or any other request right when he asks.

I know he is declining rapidly and soon will come a time when I wish he were asking for something.... but right now I AM TIRED!
 
Yes Dani--it hard to stay to still be who we use to be and not fall into the trap of patient/caregiver. I want to be a wife and lover again to my strong and funny and capable husband--sigh.

Mr. Body Fluids?! I love it! good move keeping your sense of humor--That always helps!
 
I know how you feel and I agree with all of it except now that my mother is gone all I want is to spend another day with her even if it means spending it bathing, dressing, feeding, medicating, bathroom and all the other things that filled every waking moment of my life from the day of diagnosis until she died this Tuesday (12-13-2011). None of that matters anymore because there was great stuff in between: watching TV together, watching her smile at my jokes and attempts to create different voices for the characters in the books I read to her, painting flowers on her toenails and watching her motor her way through the mall on Halloween while wearing a silly musical witch's hat, praying with her when the pastor came to visit and watching her make funny faces as I tried to prepare a cold Thanksgiving dinner because odors made it difficult for her to breathe. I know that its hard and frustrating and stressful but believe me when its over you'll miss it. That said, I admire your strength, your sense of humor and my hopes and prayer go out to you.
 
I guess we are all different in terms of how we feel about caregiving once it is taking place, and once it is over. And it takes many forms. some of the care is about the body, some about the mind and the soul. I know that my partner would rather go unshaven, have interesting conversation or venture outside, than be immaculately dressed and slumped in his chair. This is what I was referring as 'means to an end'...the tasks do not matter, what matters is what we DO with our time.

More importantly, I feel there is quite a marked difference in being a caregiver for six months or a year, and being a caregiver for 5 years, for example. The speed of progression as well as the length of caregiving can determine the dynamic of the relationship with our PALs.

Dani
 
Hey Dani-- I agree. dynamics do change with the length of illness. Not to step on any toes, but I dont know what is worse quick and brutal or long and drawn out. I can only speak from the long and drawn out as you can, but 5 years is a long time to be at someones bec and call constantly. I love my husband and do everything to make things perfect and comfortable for him but it is killing me physically and emotionally. my life is about caring for him and work. nothing else. my husband is not interested in ALS, but wants to be buffed and polished and have interesting activities on the computer with other people not me. I am a means to an end...
 
Barbie, my life too is about working and caring for both Laurence and a 2 year old. And a few stolen moments with Laurence. I know what you mean by 'quick and brutal' vs 'long and drawn out' - absolutely not possible to say that one is worse or better than the other.
As for 'being' means to an end...that is tough, because when physically and emotionally drained one needs SOMETHING back. I find the emotionally drained part much harder than simple physical tasks. But I know two are interlinked.

In some of my 'what the life will be after' fantasies I am walking in the hills, joining exercise classes, lunching with friends, always taking stairs...in others I am this empty, lonely, identity-less creature, probably full of guilt too. Who knows...
 
Liz, probably a little of both.
 
I think both as well--I have the same thoughts...
 
Funny how caregivers have similar thoughts. My husband is on the fast track. I know I will regret all the time we didn't have but right now I have some help during the day but at night.... it is me alone. Well we deal with our circumstances the best we can!
 
I have been at this for three years now. The saddest eyes that seek my face are not those of friends or family--they are the eyes of my husband's doctors. They know what is down the road for me. My husband is still functional and though he has received a death sentence, it appears his life will seep away over years, not months.

In order to bring stability to his life; to organize every aspect of his day; to find ways to cheer and uplift him--I have relinquished my own life. I do not find this fulfilling. I do not believe I am a better person because I have dedicated myself to this cause. I do not believe there will be a special place in heaven for me simply because I am a caregiver. Every day I awaken to the loss of self. The sad fact is that nothing will make it better. This is a cruel, lonely road. Nobody is around to help in the middle of the night. And nobody ever will be.

Caregivers survive. But I suspect our lives are unalterably changed for the worst. My husband and I do still share a life. And we will share a life for the forseeable future. But the life we now share is ALS. And the person that I used to be is gone with the wind. And the friends I had are wisps of the past. And the family of which I am a part are mystified and uncomfortable and generally absent.

There is no positive spin I can place on this life event. Under ordinary circumstances death is simply a constant in the business of living. People live, people die. In this case, however, death occurs from a distance--nuanced and stealthy and inevitable. My husband will bear the brunt of ALS and I will be his constant companion in that journey.

So I look back into the sad eyes of my husband's doctors and I think they are looking at a ghost. They know.

V, Caregiver
 
Every time we go to clinic they try to add something new to our daily routine, saying its only 20 minutes a day,etc. But it's more like 40 minutes and oh by the way, you need to do it twice a day. They keep adding more and more of these things. I know they're looking out for my best interests, but I don't have a whole lot of life left, I'd like to spend some of that time actually living.
 
in a normal relationship, there is give and take and sometimes one person needs more than the other, that is ok be cause next time it will be the other way around . you fill each other's cup up. with ALS, one gives always gives more and one always takes more so the balance in a relationship is askew. I find my cup is empty alot.

It is what it is folks--ain't nothing we can do about it.
 
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