Crisis

[Barbie]

Hey Dani--I am so sorry that you are all alone there. just knowso many here are thinking of you today and with you in spirit.

 

[Danijela]

Dear All, thank you. It's been said before but you are the only ones who have an insight what all of this means- emotionally and practically. Yesterday was chaotic, meaningless visits from people who can't do anything for us and like to 'chat'. I finally managed to book a sitter privately so got about 5 hrs of sleep. Marie. Curie are hit and miss Rachel, we are due 2 visits per week but lucky if get 2 per month. I will ask about Buccal you mention. Comments by friends and family, bar a couple, are draining me and making me feel empty. I also feel guilt, for the fact that I will have some kind of life and L is suffering. XD

 

[Toto's Dorothy]

Dani, sending prayers that last night was a better night for the 3 of you.

Just saw your post. Am glad you were able to get a little sleep. Can you push the fact that you are entitled to 2 days a week or will that fall on deaf ears?

I know many would be upset; but I remember someone here posting a sign at the door. Maybe send an e mail to those that drain you explaining (yes I know you have explained it to them before) the wretched path of ALS. Have them leave it at the door and request of them a time for them to spend with L, you or your little one. I know this is easier said than done and I should take my own advice.

Please take care of yourself. Remember you are important to us, too.

 

[momap53]

So glad you got a bit of rest. Sorry that Marie Curie isn't stepping up.

This is such a hard path for all of us. Try not to feel guilty, I sure don't want my CALS to.we PALS know that you suffer with us through each stage. Prayers for peace and strength for all of you.

 

[rachelg]

I am relieved that you have had a tiny bit of rest. As for people and visitors, they speak but I, like you, find them draining, I dont think we even hear what they say.

Please know that I am thinking of you xx

 

[vzandt]

I know in their hearts they mean well...but my head keeps telling them to just shut up.

 

[Miss]

Again, my thoughts are with you.

 

[laurel]

Dani maybe it is now time to restrict/limit visitors. When my good friend was dying, her partner did this to save her sanity. The only visitors welcome without pre-arrangement were a select few. The ones that were welcomed were the ones who helped physically with the care or the housekeeping. All others had to phone first and visit only for a strict 10 minutes only. I know there were a lot of outraged family and friends, but it was the right thing for my friend and her partner. The atmosphere became serene and stayed that way in comparison to the chaotic coming and goings that took place before the restrictions were put in place. My friend's partner also made a schedule for those of us who did go regularly i.e. Laurel 10 AM each morning to give bed bath, Sue daily 1 PM -3 PM so partner could nap, Mary 4 PM daily to make dinner, Linda 4 PM to walk the dog etc. The schedule worked well and we all felt honoured to be on the schedule. Not all of us helpers were close friends--neighbors and acquaintances were drafted too. I remember the dog walker was my friend's doctor's wife who heard about the schedule and offered to jump in and help. So don't hesitate to ask for help and be explicit about what you need. Hugs and prayers.
Laurel

 

[vzandt]

Very good idea laurel.

 

[Katie C]

Dani... I think there is a point where we all go through that guilt... try not to let it get to you. I agree that it sounds like time for morphine.

 

[brooksea]

Oh, Dani! You cannot avoid the guilt. That's a fact. I have admired the way you have been able to handle caring for your husband, your child and your profession. You are doing such a wonderful job. I hate that things seem topsy turvy for y'all. Either the sign on the door, the schedule of visitors or both is what is needed. gagirl put the sign on their front door, as she was exhausted from people wanting to visit. You feel obligated to cater to the visitors and yet care for your pALS at the same time. That is a truly difficult job that goes beyond what should be expected of a cALS. Of course, no one would understand that if they haven't dealt with ALS.

We all love you Dani and send you strength.

 

[sadiemae]

HUGS Keep strong, and give your little one a special hug.

 

[Compass Rose]

Dani, I wish I had something insightful and helpful to say. I'm so sorry you're going through this.

 

[Miss]

Hope Laurence had a better night (and in turn, you!). Some of us have been there, and others are going there. The greatest gift of this forum is knowing that you are never alone. We get it. Just know that you and your family are in someone's thoughts every moment of every day!

 

[Miss]

Woke up this morning thinking of you and your family. I hope your day is going well. Thoughts are with you.