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CoachMeg

Distinguished member
Joined
Mar 4, 2011
Messages
209
Reason
Loved one DX
Diagnosis
02/2011
Country
US
State
CA
City
Roseville
That is it. I am so scared. Not just about losing my husband, but the whole process is starting to scare me. Everyone tells me how strong I am and what a great job I am doing. But, ya know what? I really don't feel like it. I can't do anything to make him better.

He fell last night. Hard on his knees on the tile bathroom floor. I couldn't get him up. He is too weak to help much so I had to call a neighbor for help. Neighbor is a godsend on many levels. But dang it all to heck. He is getting weaker, and shorter of breath, and his appetite is not what it used to be. Last night, he actually mentioned maybe it was time for a hospital bed.

I hate this disease. It is now causing him pain. I don't know what to do. He says his muscles hurt. Last night, he said it was like someone was putting a hot poker through his knee. What is up with that? I was deluded to think there would be minimal physical pain, but after the last few nights, I am even more scared for him.

I hate this disease and what it is taking away from my husband. And from my kids.....
Today I struggle to be positive and to have faith.
Meg:cry:
 
Meg I'm so sorry to hear about the recent losses your hubby is experiencing. It is scary. I really hate to think about what my CALS is facing as my body continues to weaken.

Do you have a Hoyer lift yet? Can you get one? It would make it possible for you to help him up by yourself.

Sometimes the joints hurt because the surrounding muscles are no longer providing support. Could you try a soft knee brace part of the time? Maybe some type of analgesic cream directly to the sore part?

Give your clinic a call and let them know to go ahead and order the hospital bed. Being able to raise and lower the height of the bed may make it easier for him to enter and exit the bed. Raising the head will certainly make it easier for him to sit up without expending so much energy.

If he has increasing shortness of breath it may be contributing to his loss of appetite. Does he have BiPap? Maybe it would help to have him use it for an hour before mealtimes.

Do contact your Doc or Clinic to let them know about the changes so that they can order whatever equipment you need.
 
Everything that Deb said. It is hard to stay positive with this awful disease. The positives I can think of are that you have each other and that he's still with you physically. Thinking of you.
 
Meg, I am so sorry...I hear ya on the being strong thing...sometimes you just want to cry out and say I can't be strong anymore! Please take away this pain and obstacles I can't do it!

You have though been strong, and since you are still here and even writing for help and not curled up in a corner somewhere, ..you are being strong. That in itself shows marvelous strength.

Ask for some pain meds for your husband that might help with the wasting away, heat pads work too, and massaging the area. I have a massage 'chair' that is just a pad for back and under legs I sit on that on the couch and it helps me tremendously. Also, since he did fall on his knees on the tile last night...which I did not too long ago myself...that is going to get pretty swollen and bruised. But make sure that pain in his knee isn't something more like he cracked his knee, or tore the cartildge. If the pain doesn't go away in his knee in about a week, or the swelling...time to contact your gp and maybe get an mri of the knee..don't even bother with xray ...mri is way to go to check for tears and such.

Overall, just be there as much as you can..but know you must take time to yourself as well. In order to help him, you must be 100 precent yourself! Take care.
 
Meg, I am so sorry you are feeling so hopeless and helpless right now. So sorry your hubby felll and is hurting so much right now. I will be praying for you both. You have and will continue to be a pillar of strength for your husband, it will come from above as you need it. It is ok to feel weak and take some time to just let it out, cry, scream, whatever it takes, then regroup and go on, one day at a time hon. That's all any of us can do....You have recieved great advise for others. Know we are here for you all the time. {{{HUGS}}}
 
Hey, Meg. I'm very sorry about the difficulties you and your husband are facing at the moment. You are doing the best you can!

Get that bed. You may have to "modify" it to make it comfortable for him, as those mattresses are torture for a pALS. Also, check into getting him a prescription for Percocet or Endocet. It takes the edge off for a while. The doc should have no problem prescribing that and hubby will get over any drowsiness the drug causes. He may eventually have to go with a more powerful drug, but hopefully that will be a long way off.

Hang in there, Meg!
 
Meg--I so understand. I think sometimes it seems like the fear and overwhelmingness comes and goes with out reason. One day you are strong and tough the next you are crying and lost. I am scared too. I believe that everyone here is scared of ALS--even if they say they are not.

It is ok to cry and weep and feel helpless--but then you (me, every caregiver here) has to get themselves up, brush themselves off, and keep on keeping on for the ones we love.

I hope tomorrow will be a more positive day for you. You are a special person.
 
Bob used to take an Aleve everyday. That helped him tremendously.
 
I'm so sorry that he fell. Falls are so scary. You said that he hit his knees on the tile floor and he felt like a hot poker stabbing his knee. Do you think he could have cracked a knee cap?

I wish you both a better night tonight.

Take care.
 
Ohh Meg, I'm so sorry...... I will keep you and your family in my prayers tonight!
 
Meg.. if he fell onto his knees he could well have some nasty bruising going on. Try icing it the way you would any ol' sports injury and see if it doesn't give him some relief. Sometimes we get so caught up in the ALS we forget the basics.
 
Thank you all for your kind words. He isn't bruised at all from falling, which is good. The pain is mostly at night. Gonna try doing some moves the PT suggested to see if he sleeps a little more soundly.

Having a better day today. That is of course because I was home with him all day and I could keep an eye on him while doing things around the house.

Tomorrow he can have a break from me and his friends will come for lunch. Then thursday, I am home again.

One day, one cup of tea at a time, right?
Love and light
Meg
 
Meg,

I am right there with you, I think this disease is one of the cruelest things that could happen to a person. My dad has been Diagnosed since November 2010 and since then he has deteriorated quite a bit.

And I hate to think of him as deteriorating, or going down hill those phrases just eat me up. My father was a strong man, the type that carried his little girl around on his shoulders and carried logs and big pieces of machineary.

To see him struggle to lift a fork kills me.

My dad also fell not that long ago and we had to get the neighbours to help to get him up. The thing that made that situation alright for me because I was worried for him because he is such a proud man. But when the Neighbours came in dad was joking with them. He has kept such a positive attitude, at least to the public. I know privately it really bothers him that he can't communicate with us very well any more and that he needs to ask for help with the most mundane tasks.

I try to think of every day I have him giving me a goffey little grin as a good day. Try to find somthing every day that makes you smile. There will be hard days that even a smirk will be hard to pull off but you need to find that one thing that makes it all worthwhile.
 
Meg hon I know your feelings...so so hard to want to do something, and feel so helpless.
 
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