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ruthiep

Distinguished member
Joined
Feb 28, 2011
Messages
174
Reason
Loved one DX
Diagnosis
01/2011
Country
US
State
AL
City
Enterprise
As silly as it sounds, how the heck do you put the diagnosis on the “back burner”? Scott was diagnosed in January 2011, so we’ve have 8 months to digest the news. I keep waiting for the night that I actually sleep “all night” without the need to wake up and touch him. I’m waiting for the morning that I wake up and not think about the upcoming changes in our lives. I seem to be scared 24/7 of what’s to come....! Seems like the majority of our conversations seem on focus around this darn disease----new roof....cooktop on stove replaced....new flooring....life insurance....trip in December to Key West! Damn, it’s like we’re trying to get it all in NOW. Our 3 ½ year old grandson wants to sleep with us every night-no problem—he thinks his Yaya has hung the moon and all the stars! Is it best for our grandson----probably not! I’m trying to find a way to “FIT” this disease INTO our lives without it controlling OUR lives. I’m having some difficulty in this arena and would truly appreciate all words of wisdom and experience. Thoughts and hugs to all!

Ruth
 
Ruth- hang in there. though you have had eight months to digest, its still fairly new. and considering your husband is still progressing, its completely normal for you to be feeling this way. most mourn each and every loss of function and alot of times, when something else goes, it throws the disease right back into your face.
For me, its taken years.... but im in a different situation. my pals cannot progress anymore. and this still took me a long time to come to terms with it all. to be completely honest, i still dont except it 100% and i never will. but it got to a point to where i had to force myself to quit constantly thinking of the worst, because i was wasting the time that i do have with my pals. like you have mentioned before, my pals and i have a great sense of humor about it all, and that truly helps.
I havent given you any advice here, and for that i am sorry. i just wanted to share a small piece of my story so you know that you are not alone. Best wishes to you and yours.
 
Ruth, speaking as a nurse, with my nursey cap on, I do not think there is a " fitting this disease into our lives, without it becoming your life". The very nature of MND's are, that the constant changes and challenges are always there and need to be managed and dealt with. It's terribly hard on both Cals and pals, no doubt. It's horrible, it sucks, it's a monster of a disease.
We can throw up our hands and say, why? But why not? This thing has been set before you. It's not something that you would have dreamed in a million years, you would both be facing right now. But you are and it will take over.
It is early days and it's important to plan, enjoy the moments doing things while you still can, cuddling your grandchild etc etc. It will never go away.
I do not have ALS, but with a pls diagnosis, married to a neurologist, it Never ever goes away. It's going to be the centre of everything we plan, everything we do. He spends hours looking for answers, which are not there, worrying about the future. Sometimes I truly believe it is easier for the sufferer, than the carer.
My heart goes out to you both. I wish it would just go away. Meantime, plan, love, hug, laugh.
You will get the strength you need. Us humans usually do.
Love Aly
 
I had a really GREAT post, but lost it. LOL

I'll get to the point: Y'all are new to the diagnosis. It will not go away. Do everything you want NOW. Let the boy hug YaYa all he wants, as he will only remember he was the best in the world. He's too young to remember anything other than that. Be thankful of that, too!

Sorry to be so brief. I lost my original, eloquent post! ;)
 
I feel a lot like you do, Ruth. My husband is young and we have three children at home. I cry myself to sleep just about every night. I find support here, on this site. I keep praying that there will be a cure, that I will deal with things better, that his progression will slow down, etc. All we can do is make the most of each day. I hope things get easier for you, and everyone else affected by this awful disease.
 
Your experiencing life in its many twist and turns as you always have, with a slight increase in fear of uncertainty, With a diagnoses such as ALS the feelings are merely magnified. Like the song says 'Live like you were dying'. Have you ever read those lyrics? Love him, love yourself, your family, its over in a blink.

I'll take every moment, I know that I own them
It's all up to you to do whatever you choose
Live like you're dying and never stop trying
It's all you can do, use what's been given to you

All of the moments you didn't notice gone in the blink of an eye
And all of the feelings you can't help feeling no matter how you try
 
When my husband was diagnosed, my GP put me on a mild anti-anxiety med right away (2 yrs ago). Maybe you should talk to him about this.
I just could not imagine how I was going to cope. What you have to remember is that as the disease progresses (fast or slow), you learn to cope with each stage. Kind of a learning curve.
One thing I found very helpful is to plan one step ahead, so that you are kinda prepared for when it happens. Get equipment berfore it is actually needed, so that when it is needed it is there.
Do all the things you can now. Enjoy life and your grandkids as much a you can.
Just take one day at a time.
 
Three years on and it does not 'fit'. It is like somebody constantly keeps moving the goal posts. In our early days my mind was occupied with 'what ifs' and 'what whens'...right now I do not have time to go over things so much as I am usually too shattered from caring and duties. But the pain is always there, and all I do is tinged by MND. I try not to let it but it usually wins.
 
My husband began losing stamina in late 2008. By the summer of 2009 a bright internist broached the ALS subject at my husband's persistent questioning and he sent us to a neurologist. By 2010 my husband had undergone 2 EMG's with ALS diagnoses.

After reading and reading and reading about the disease and the experiences of caregivers, I fully understood that I had to learn to do all the things, large and small, that my husband had done for years. I learned to use a drill and other tools; I took control of our finances under his tutelage; I learned to manage the irrigation system and to adjust sprinkler heads; I rearranged our garage space and the work bench so that I knew where each tool was and what it was used for. I disposed of every non essential item in the house or garage so that I could achieve clarity, simplicity and focus about what was necessary to remember or achieve every day.

Managing the course of caregiving has become a manageable routine over time. Eliminating the uncertainties about my ability to manage on my own has helped both of us to deal with the unknowns ahead. I no longer mourn the progressive losses--I observe and plan for what changes need to occur in order to deal with them effectively.

Once when I was a little girl walking home from school, I was caught in a terrible thunderstorm. I ran to a house and crouched on the porch terrified and crying. As young as I was, the moment came when I knew I could not cry and think at the same time. I needed to get home in one piece--and there were lots of porches along the way where I could hunker down. And that's what I did, porch by porch.

So this is how I deal with the situation brought about by the disease. One porch at a time. As I have said to my husband on a number of occasions when he has been depressed by having to ask for my help, "The strong one does the lifting. You were the strong one for years, now it's my turn."

Essentially my advice to you is to use each day as a learning platform for personal growth. Competence is empowering and calming.

V
Caregiver
 
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I'm not sure one ever makes it "fit"... because every time you think you have, the disease comes up with something new to throw at you. At some point, maybe out of simple weariness, you learn to not waste precious time and energy fighting it ut merely assess what a particular day is going to bring and go with it. Our family motto became "It is what it is..." I know many other CALS that have used that same phrase. I agree that perhaps some anti anxiety meds at least for the rough spots might help you out.
 
There's no useful need in crying daily. Take the anti-depressants or anti-anxiety meds, and you will be able to get on with the useful, productive, even happy parts of your lives. Better living through chemistry.
 
I'm kind of the "Do it NOW" class. Enjoy today. None of us know exactly what tomorrow will bring. Of course, learn about the monster you'll be fighting. But there are two choices.

These are the choices a person with any illness needs to make. He can be a person with ALS---or he can be ALS. Try not to let it define your lives until and unless there is no other option. I have diabetes. I can be a diabetic or a person with diabetes. Hope that makes sense.

Live today--learn today--and ENJOY today. Those moments with the grandchild will be cherished. Help him learn of all the new equipment that can make your lives easier sooner rather than later.

There are a lot of proactive things you can do...and, as suggested, don't be afraid to treat the depression and anxiety for both of you.


We are here to listen and give tips and suggestions as needed--and so is the ALSA.
 
I think one of the best tips I found when my husband was diagnosed was to get equipment and things before you actually needed them. Example being a walker. Practice using it before you "have" to use it. It doesn't relieve any of the anxiety for the caregiver, but I used it as a way to ease my husband to the next stages of progression. I think it made it easier for him.
I don't have any other ideas for the anxiety. I did use antidepressants for myself and for my husband (although, he didn't need them near as much as I did). I also had a prescription for an anxiety medication that I could take when I could feel that my emotions were escalating. I am sure they helped, but as my doctor said, "there isn't enough medication in the world to alleviate the stress of your circumstances". I tried to talk my husband into traveling and doing some of the things we loved before he was too ill to do them. I had no luck with that. So if your husband is willing, do everything you want to when you can. I think that was one of my biggest stressors - he just focused on himself without regard for my feelings. (he also had the dementia that sometimes goes along with ALS and empathy was one of the things he lost. He even told someone that we couldn't go to Olive Garden anymore because he was taking coumadin and couldn't eat salads). I also read that how you handle the disease is pretty much the way you have always handled life. My husband was the calm, quiet, glass half full type and I was the worrier, glass half empty type who needed to know when things were going to happen and have plans for the consequences of what happened. ALS has taught me that you cannot plan for everything in life. I am not sure if you saw my post, but my husband passed away on Sunday Aug. 14th. On Thurs. we were planning for a trip to Chicago. Friday he was almost hyperventilating because his lungs were not functioning well; he was started on morphine and was gone on Sunday morning. We were supposed to have months if not a couple of years left. I did not see this coming. S
So enjoy every moment. Try not to worry about things that you cannot change. Celebrate EVERYTHING!
My thoughts and prayers are with you.
Janis
 
I can tell you that we have been dealing with rhi diagnosis for a year, that ther is esy, right, or wrong way to deal with this. I cry every day, just for a bit. The worse is when people give me the sound or look of pity. That only makes it worse. I wake up every time he moves, breathes heavy, or BLINKS. Sleep is not my friend. As far as insurance of any kind goes, that does matter to a. Point. Bottom line is the care and comfort of the PALS. My husband is replacing many items that need it in the house, which, if that makes him feel better, then so be it. My dad did the same when dying from his brain tumor. That is the love they have to take care of you when they are gone. If it mkes them feel better to be able provide for you after they are gone, then let them. It's not bout the money. It is a crappy, horrifying, nasty disease that robs the entire cre item/family, not just the PALS. Live one day at a time, love, laugh, enjoy, and make memories while you can!
 
I can only focus on today, and Kevin's condition today. I know what is comong, and it can be overwhelming, but if I concentrate on his condition today, the rest doesnt seem so huge. I keep remembering my Pastor in Tampa saying " you eat an elephant one bite at a time!"
 
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