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Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,681
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Hi guys, I am just checking in. hanging in there for the holidays. Definitely lower key than other years--we did put up a tree but no decorations on it. I just don't have the energy!

My sister in law visited recently and she told everyone in the family that my husband appears to be stronger and better and his speech is more clear! I am not sure who she is talking about...:-?

I should feel happy that she thinks that since she hasn't seen him in a year, but it makes me mad when I get calls from aunts and grandmas asking about his recovery. I don't want to go in to a bunch of detail, so I just say well, no that is really not true. They also are irritated that I will not be attending the family Christmas party--but I am sending kids, presents and food. husband cant go--it is crowded and a long trip and the house is up stairs and he can't eat the food or use the bathrooms. The CNA can't work on the weekend, so I need to stay with him--he can't stay home alone for 12 hours (that is the trip up and back and the party).

On the good side, since we didn't decorate and I didn't bake anything and have no parties to attend and My husband did all the shopping on line, I only had to wrap presents and cook Christmas dinner. So I am ready as soon as I go grocery shopping this weekend!

Happy holidays to all,

Barbie aka the complainer
 
Barbie

You complain the least of us. I can understand your extended family still thinking about recovery. My Grandmother will not accept my "condition"(whatever that means) and is always asking too. I just ignore it and change the subject.

You do what is best for you and your husband. I hope you have some peace this season. You are so deserving and I pray for you and all the CALS here. Your job is the toughest of all, bless you.
 
Hello Barbie,
I have been on this forum for a very short time, but I see you like Vicki did, one of the least complainers. Happy Holidays to you. I hope that the less stress of not having to do too much and not having to go to parties etc, helps you to enjoy the season better.
My family has been opposite, rather than waiting for recovery, they keep asking about when the "end" is. The ones that are not nearby, really don't understand the situation, nor understand the illness or the stress. I try to just tell them an overview, or as little as possible, and keep the details for the family members that are right here all the time.
I am probably rambling because I need to sleep. take care.
Mary
 
Oh boy do I hear what you are saying about no energy! That is exactly what I feel like I am saying all the time now. I take care of my mom in the am, usually get home around noon, and then I have a couple of hrs til my son gets home from school. I'm so tired when I get home from my moms that I can't do much of anything aside from some light chores and a lot of laying on the couch. Then there is figuring out something for dinner, which I thank the Lord my husband will eat anything that is in the fridge, and I go back to my moms for a couple of hours in the evening. I feel like I don't have any stretch of time in my own home when I am energetic. Thankfully we are having some renovations done in the house so it was impossible for me to decorate for Christmas - but I don't think I could've done it anyway!

You don't complain Barbie - I don't think many caregivers on here complain. I think we have to be able to talk about this kind of stuff or we'd go crazy. I know I'll get my life back someday - but heaven knows what shape I will be in (mentally and physically) by the time that happens. :-( Trina
 
I think many of us will be in the same boat!

No decorations here. I do have a granddaughter arriving on Monday afternoon, so if they want they can do some decorating, probably no tree as we don't have room inside with a pwc now being the main mode of transport here.

I'm not doing any real cooking either, everyone is either bringing stuff or throwing in some money. The home care worker is making stuff with my PALS directing while I go out for the last shop on Monday morning. Um I should buy people some kind of something for under the non-existent tree? :lol:
 
Am I the only one that would just like to sleep during the holidays? Managed to put up a tree and decorate my mantel with the help of our son and his family. Really didn't feel like any of it but Christmas is my husbands favorite time of the year. He was a professional Santa and loves all the decorations. Family coming over for Christmas dinner. Thank goodness I only have to cook a few things. Will limit the festivities to 3 hours. After that time limit he is pretty much worn out and so am I. Lord give me strength!
 
Hi Santa Joe, I was at the Charlotte clinic with my mom yesterday and saw someone with Goose Creek on their name tag, we are from York, SC. Man that was a long day. I was worn out, 7 hours at that place.
 
Janie H, We use to go to the MUSC ALS clinic. Haven't been in a while. He is bedridden and on a vent. I have to get a private ambulance service to take him to the clinic and he is worn out. Not that they aren't wonderful at MUSC but really, what can they do? We have an amazing doctor that comes to the house. What a blessing! Glad to see another Carolina Girl.
 
I wish I could get a doctor that comes to the house. shoot, ours won't even give him a script over the phone.
 
Barbie it's been a true blessing! He was once in private practice and saw the need for a mobile doctor. I can't imagine the nightmare I would have getting him to various appointments. He has sent a mobile x-Ray tech with her mobile unit when he thought he might have had a bowel obstruction. His main goal is to keep Joe out of the hospital. So far so good. He is a wonderful, caring and compassionate doctor. I am a lucky lady.
 
Santa joe, Not too many of us around here, so odd that there was another person from Goose Creek, (don't know where that is)she spoke with my mother, God bless you and your husband, Merry Christmas.
 
I think I will start looking around for a doctor to come to the house. My husband is also on the vent and bedridden, and while I think the ALS clinic in Grand Rapids has been wonderful to us, I can't help but think that there isn't really anything that they can do for us. Debbie, how long has Joe been on the vent?
 
Joe has been on a vent since January 2012. That's a whole story in itself. Read my blog and you will get the entire picture. It's been one wild ride.
 
Well I hung a wreath on the door today, does that count as decorating? My son and DIL are coming tomorrow, and she says she loves to decorate. I want this to be a really nice Christmas for Tim, but I am struggling to get the house clean, and manage all of his equipment, let alone decorate. Last year it was decided that my family (sisters, mother, nieces and nephews) would be coming here as we have a new open concept home, but as my husband's condition deteriorated my one sister that usually has the dinner, said that she thought it best to have it at her place. I thank God for her every day, and they have a ramp that Tim can use to get in. We have so much to be thankful for, but I am still upset that I'm not managing to have our first Christmas in our new home really special. This is the first Christmas I have had off for 8 years or more, but I am still feeling overwhelmed.
I am glad I am not the only one finding it hard to get into the spirit of decorating, etc. I hope everyone here has a great Christmas.
 
Why is it whenever I finally get online (the internet service here stinks) my husband insists that he needs me. to move this or that pillow etc. Anyway got to go, just wishing you Barbie and all who are in this misery with us a happy holiday and that I truly hope the new year is a better one for all.
 
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