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michelleann80

Member
Joined
Sep 12, 2015
Messages
21
Reason
CALS
Diagnosis
09/2015
Country
US
State
NC
City
Clemmons
Hello! I haven't been on the forums in quite awhile. Tonight I decided to log on and thought I would share some of what I am feeling, since you know all to well what I am going through.

Quick background.. my husband (PALS) was dx'ed Sept 2015, he is currently 40 years old. Since then we have gone through a cane, forearm crutches, to now the wheelchair. Just a manual one for now. Up until about 2 weeks ago, he could transfer himself- but can no longer do that. So right now, I am transferring him from his wheelchair, to bed and to the toilet and shower bench.

We have a clinic appt. on 1/11, where I am going to ask if they have a hoyer lift in the loan closet we can borrow. Every 3 months something there is a HUGE life altering development to report to the clinic. I know ALS can change quickly, but come on!

I have also been recently introduced to bathroom accidents. Thank GOD my stomach is stronger than I thought it was. He has kindly agreed to wear depend type bottoms just in case of an accident.

We had a $8k barrier free shower installed. Really? 8k? Totally being financed, and will be paying that off forever. Had to do it so he could shower. What other choice did we have?

His hands are starting to curl, although he still does have some upper body strength which is great. His breathing seems to be normal right now.

He never ever wants to leave the house, for various reasons. Not sure how I feel about that. I ask every time I go somewhere if he wants to go, he does not. I pick my battles and figure if he wants to go, he will go, no sense in trying to force him to leave the house.

I am scared. Things are changing and I am scared I am not going to be able to do everything I need to do for him, and do it well. I am so very thankful I work at home, so I am here during the day. There would be no way I could be gone for 8 hours a day. As of right now, I am afraid to leave him home alone just to go to the grocery store.

He has had some moments, a couple where he has broken down and cried. As hard as it was to see him like that, I was glad. Because finally he was showing some emotion about this. He has always had the attitude, can't do anything to change it, it is what it is.... So, I think it did him some good to feel and cry and just let it out. Do you know what I mean?

Everyone asks me if I need any help, is there anything they can do. I appreciate it, but nothing now. Not really anyways. Most of the things he needs done now, are very personal- and I am telling you right now he is not at the point where he is ok that anyone but me is doing that stuff. And, for now I can handle it. But I do know as time goes one, we will have to have some help. Talking to him about these things here recently. He totally understands, which I am thankful for.

The thing that scares me the most is, he does not want any sort of intervention. Nothing. So what will happen? His mom asks me...I don't know! Really need to have these discussions at our next clinic appt. The unknown is so frightening.

I really really really hate ALS. Thanks for listening (reading)! I really just felt the need to type all this out.

Thanks again!
Michelle
 
Hi Michelle, it has been a long time since your last post. I remember you well. Your hubby was diagnosed the same month as mine. Hugs and thoughts are with you. Its like we are both in the same place.

Our Christmas was tough with Steve falling so many times and now in a wheelchair full time. He also needs assistance for most things and cant be left alone. He is also having more moments of breaking down. He snaps right back but so sad to watch. He doesn't go any where other than the doctor. His breathing is also getting bad.

Dear Michelle, I get your fear. I am right there with you. I now wake each day....and go to bed each day... terrified of the unknown. I have no words to offer you... for guidance... right now. I so wish I could. They only thing I can say is we are here and understand. I know its hard to login in here at times but it has also been my lifeline. We all suffer with moments of fear and anger. We all worry about our loved ones... we all are tired and changed. It is all to REAL.

I never knew I could feel so much hate and be so afraid. I wish I could travel at the speed of light and get and give all the CALS a big hug. Here is a big virtual hug for you and as I am typing some tears of understanding.
 
Hi Deb! You are so right! I should log in more and interact with others that are going through the same thing as we are! For a long time, although things were changing, they were manageable.. but now, it's getting pretty tough!! Thanks so much for responding! I knew there were people here that would understand. Big virtual hug back to you!!!
 
Hi Michelle! My PALS was dx'd in Oct '15. He is also close to where your PALS and Deb's PALS are. Still walking but falling more often.

No idea what is close to you but some folks are able to order groceries and gave them delivered to your a or even you home. Our Walmart is starting that in the spring. I wish they had it now, it would sure be helpful.

We also have many friends and family that SAY they are willing to help. Like you, my PALS wouldn't want outside help at this point or never really but at some point he will have to accept that I am sure. I was told about a website that is free called lotsahelpinghands that you can set up and friends and family can join. You then add things to the calendar and an email goes out and friends can volunteer to help on the calendar.

I added my first item yesterday. I need to move a desk so when the wheelchair comes, he can get to his desk more easily. Not sure if it will be a success or not. We shall see. We gave 40 members that have joined so far.

Just started me thoughts. I hope it helps!
 
Hugs Michelle - I'm going to tell you to accept help. However, make it what you need it to be. As in, can you run and pick up some milk and bread for me? Can you come and do some laundry/cleaning? Can you rake leaves or cut the grass, pull weeds. Those are all things that you realize are a bigger help than you might think. They are also things that have nothing to due with items your DH may not be able to accept yet. Things I should have done more of early on.

Trust me, I know it's hard to ask someone to come do laundry or clean, but trust me, once you can let that go and let someone else you will feel much relief. That frees you up to do the personal stuff.

Hugs and hang in there,

Sue
 
Michelle I'm glad you posted.

I started by having people come here and help me - housework, meal prep stuff that gave me more time to look after Chris. It helped us both adjust to having people in our home, and helped those people get to know Chris a little as things got harder and more and more help was needed.

My Chris had a peg, but no breathing support of any kind. He still refused so many meals through the peg and kept eating well past when he should have stopped.

He did suffer an aspiration pneumonia that was the beginning of the end of him.

He did however have a very peaceful passing, at home with me in a dignified way with no fear or undue suffering.

I believe in the importance of PALS making their own choices whether it is what we think is best, or is what we think we want. It's not easy.

Many PALS choose no intervention (I am presuming by this you mean no peg, bipap or vent?) and if they are cared for well, they can pass peacefully with good palliative care. I've known this to happen many times.
 
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after reading this read, i want to thank cals for understanding your PALS decision. I am one of those PALS who does not want any intervention prolonging my life. I will not suffer the long goodbye, nor do I want my family to endure it either,
 
Hello Soonerwife! I was just saying the other day I wished one of our grocery store delivered! None do right now, but hoping soon. They do have it where I can order them online and pick them up, so that is a big help. Thank you for the website! I will look into, that sounds like it would be very helpful! There are all sorts of little things around the house I am trying to get done, so that is great. Thanks so much! *Hugs*
 
Hi Narrowminded! Yes, I need to do that for sure. If someone could come fold and put away some laundry, that would be so helpful. Just need to ask! Thanks for the advice!! *Hugs*
 
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Many PALS choose no intervention (I am presuming by this you mean no peg, bipap or vent?).

Hello! Yes, you presume correctly. Thank you for sharing that with me. I really do appreciate it!! *Hugs*
 
Hi Robyn,

Hugs!! Absolutely. Totally his or anyone's personal choice. I will tell you, he feels the same exact way you do. Whatever happens I will be here for him and support him!
 
When I broke my toe and Chris was nearly completely housebound a girlfriend offered to shop for me.

I would email her my shopping list, she would shop then drop it over to the house and I would direct deposit the money back into her account. It was a life saver as I don't know how I would have walked a supermarket! Mostly I was scooting around sitting on the chair of his walker :)

If people want to help something like this can be a great way as they aren't really even in your home or personal space doing stuff.
 
michelleann80
You are only about 3 1/2 hrs from us! Perhaps a day trip!
 
michelleann80
You are only about 3 1/2 hrs from us! Perhaps a day trip!


Hi Robyn, yes you are! And you are in Myrtle Beach? We might could make that happen! :grin:
 
I would love that!:)
 
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