Old 07-19-2012, 08:15 AM #1 (permalink)
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Default Lack of heart

I feel for my mother in law.

She is still in good shape ... even if she has already lost some ...

On one hand they tell her ...
-don't worry for your blood pressure anymore
-don't worry for your cholesterol anymore
-Enjoy life right now

On another hand they say ...
-Do less, it is better for you
-Don't eat nuts
-Laughing can be bad for you
-Take medication for a few more months
-But with the medication, stop cafeines, stop chocolate.


AND
-Record your voice on an ipad so when you can't talk you can press the button ...
-Learn the eye-blinking language so when you can't press the button anymore ...
-Let's do the Tracheotomy now while you are still strong ..

Can we just let her live! The worst days she has is when medical comes to her place to do excersise ... many times a week .. all kind of specialists.
-How to speak
-How to breath
-How to take her time
-How to adapt the house
-Decissions she need to take now

Come on ... she looks so sad and tired after their visits ...
-But the days we were there, we kept talking about our trips, the kids, schools, our life, other people's, etc. She laugh and had full energy.
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Old 07-19-2012, 08:49 AM #2 (permalink)
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Default Re: Lack of heart

I am so sorry! I know that there are medications which interact badly with chocolate; is it possible to find alternatives, or alter the dosage, which would enable your mother in law to continue to enjoy her treats? Milk chocolate has much less caffeine it in than dark chocolate, and white chocolate has none at all.

It's inevitably hard to plan for the future when that future looks bleak, but getting stuff done now will help to ensure that she will have more times to enjoy with her loving family. That's easy to say, but very hard to do; you are all in my prayers.
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Old 07-19-2012, 08:56 AM #3 (permalink)
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Default Re: Lack of heart

She is overwhelmed with all the information and changes. Best thing you can do is love her and keep her smiling. I never was told to limit caffeine. Chocolate is a food group to me....
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Old 07-19-2012, 09:09 AM #4 (permalink)
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Default Re: Lack of heart

Do you take riluzole (Rilutek)?
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Old 07-19-2012, 09:25 AM #5 (permalink)
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Default Re: Lack of heart

Please keep your family stories/pictures going to your MIL. Rog's highlights are seeing our daughter and granddaughter. Melissa sends him a picture of Maddie on the days we don't see her, he so looks forward to those pictures and stories about her amazing growth...

Doctor's/ clinicians visits are wearing, forces one to face the inevitability of this disease. We have clinic on Friday and it always wears Rog out...

My thoughts are with you,

Jen
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Old 07-19-2012, 09:29 AM #6 (permalink)
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Default Re: Lack of heart

I can not eat most things but to let a piece of dark chocolate melt in my mouth is bliss.

And bring on the laughter. It makes me feel great. This morning my CNA got herself and the whole bathroom wet when she lost control of the shower nozzle. We are still giggling about it.

Enjoy every moment you can.
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Old 07-19-2012, 09:46 AM #7 (permalink)
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Default Re: Lack of heart

A good laugh is what gets my husband and I through the day. We have eight grandchildren that helps provide plenty of smiles.
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Old 07-19-2012, 09:52 AM #8 (permalink)
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Default Re: Lack of heart

Thanks ...

You should have seen her face when she put away that dark chocolate ... after her first bite. When she saw almond at the store, took it in her hand, and suddenly remembered that she wasn't allowed anymore. These were the only dark moments we saw.

Her sunshine comes from her daughter and her grand-kids ... so sad that we live so far away from her.

I will tell her to let the chocolate melt in her mouth

The idea of sending a picture of her grand-kids on regular basis is a very good one ...

We have also set up skype ... so a daily touch will be great.
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Old 07-19-2012, 09:55 AM #9 (permalink)
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Default Re: Lack of heart

People who give medical advice are rarely the same people that have experienced the day to day effects of said medical advice. Then they wornder why we sometimes get demoralized and lose some of our will to live. You need their advice, but ultimately you (or in this case, your MIL) is the ultimate judge of your daily quality of life.

Keep loving her, including her in your life as best you can under your particular circumstances, and focus on her as a person instead of a patient. That will go a long way to lending her morale.
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Old 07-19-2012, 10:55 AM #10 (permalink)
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Default Re: Lack of heart

Sounds like you're on the right track! I love photos that my kids post on fb and instagram, and twitter. We talk on the phone or skype often. Visits are treasured! I'll never give up chocolate!
The fatigue is brutal. Visits to Clinic or GP physically wipe me out. Routines work best for me. She's so fortunate to have at home PT. I know it's tiring but the ROM and stretching really do help keep pain and stiffness away better than more pills with their myriad side-effects.
I'm so glad you're finding ways to be in your Mom's life without actually being there. It will mean so much to her.
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Old 07-19-2012, 08:48 PM #11 (permalink)
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Default Re: Lack of heart

Quote:
Originally Posted by cocacolafun View Post
I feel for my mother in law.

She is still in good shape ... even if she has already lost some ...

On one hand they tell her ...
-don't worry for your blood pressure anymore
-don't worry for your cholesterol anymore
-Enjoy life right now

On another hand they say ...
-Do less, it is better for you
-Don't eat nuts
-Laughing can be bad for you
-Take medication for a few more months
-But with the medication, stop cafeines, stop chocolate.


AND
-Record your voice on an ipad so when you can't talk you can press the button ...
-Learn the eye-blinking language so when you can't press the button anymore ...
-Let's do the Tracheotomy now while you are still strong ..

Can we just let her live! The worst days she has is when medical comes to her place to do excersise ... many times a week .. all kind of specialists.
-How to speak
-How to breath
-How to take her time
-How to adapt the house
-Decissions she need to take now

Come on ... she looks so sad and tired after their visits ...
-But the days we were there, we kept talking about our trips, the kids, schools, our life, other people's, etc. She laugh and had full energy.
Stopping her blood pressure and cholesterol meds increases her chances of a stroke or heart attack .Really . Who needs that and ALS.
I am living thirteen years with ALS and eat what ever l can and want to .and I take my blood pressure meds
Limit her visits to the clinic Too depressing
She doesn't need all that therapy .
I exercised in the pool for seven years .The best exercise .I never over did .
Sounds like they are bleeding the system or insurance
Increase her visits with family and friends and keep her laughing .

That's what helps

God bless her
Pat

Last edited by patricia1 : 07-19-2012 at 09:02 PM
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Old 07-20-2012, 08:52 AM #12 (permalink)
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Default Re: Lack of heart

When I started Rilutek, no one mentioned the no caffeine and chocolate thing to me. I spent 3 months being sick and nauseated until we finally figured it out. Still can't do soda, but a lil chocolate here and there is ok. I know some people have no such effects at all. So, let her try it... If it's making her sick, back off the amount. Worth a try!
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Old 07-20-2012, 12:33 PM #13 (permalink)
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Default Re: Lack of heart

I have never heard of someone telling us not to laugh. As for as the Medical staff that comes here I have told them they are not to talk about how bad this can be or hospice in front of my husband he doesn't want to hear it. The Exercises the doctor told me you can over do exercises that you shouldn't do exercises over 5 to 10 times for each exercise. Your mother in law controls now what anyone does for her or some family member may have to help her. The Medical people can only suggest something the decision making is not theirs.
My doctor visits are ever six months I go to Washington University in Saint Louis they give me no medicine to take they say they are hopeful for something soon I have heard this since 2007

Last edited by caldona : 07-20-2012 at 12:41 PM
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Old 07-21-2012, 09:02 PM #14 (permalink)
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Default Re: Lack of heart

I can almost understand the cholesterol meds as there are mixed feelings on statin drugs...but....BP Meds? They told her to stop them? WHY? A stroke is still a risk without them.

And why no chocolate? Why no caffeine? God, people with ALS are dealing with enough. Tell her to enjoy whatever makes her happy that won't cause some sort of severe reaction with a medication!

If all the exercise, etc is getting her down--tell them they can only come one day per week or something. See if there are things she can do with just family to help.

With most, I'm afraid, it's the opposite. They can't get anyone to come in and help with anything. Sounds like she's just exhausted from all the "help" and would be better off without it!

Life is too short to be miserable--to heck with what THEY want--give her what SHE wants I'm not dying, but one of my favorite songs is live like you're dying.

I try to remember it each day and try to get pleasure each day from something. For me, it's reading or watching DVDs on TV. For others, it's going window shopping or ...EATING CHOCOLATE and a diet coke.

Will to live has a lot to do with our overall well-being. The small pleasures in life are part of what makes us want to live, I think.

I know chocolate can interact with MAOI inhibitors--(depression meds) as it can rise BP sky high. Or is that why they say no chocolate? BP? I looked it up--their PDR information says it should be limited as it can alter the elimination of it--but it didn't say it 'cant be used at all'. Slower elimination of it can mean side-effects could be increased.

I think sometimes they go to extremes saying what can and can't be eaten. With the MAOI mentioned above, it can be a deadly reaction, but there is nothing in what I researched that showed it couldn't be consumed in limited quantities.

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Old 07-22-2012, 09:06 AM #15 (permalink)
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Default Re: Lack of heart

Chocolate, soda, nuts, cafeine, laughing... wtf

Take beer away, and there goes my whole diet.

I say, what's the point of living if you can't live!

I am loving life on my terms, if it's shorter because of some choices I make, well so be it.
My friends and family want to share life with me, not just watch me.

Hang in there.

Casey
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