relaxation??? hell no!!!

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LOL, given our lives, I'd take the compliment!!

I've been exhausted for the past couple of days. I'm sleeping like I'm drugged and napping the same way. I'm not sure what this is about, except maybe the routine is getting to me.
 
Yeah Becky that is how I was on the weekend. I got a llot of sleep but I was ready for a nap today. Sometimes I go to my car at lunch and nap.

Yes I took the compliment because he said it with a smile and I think he was sincere. After the last 2 weeks of hearing I needed to lose weight, someone complimenting me was sooooo nice.
 
Steph, 'lose' and'weight' are two words that should never be said to a woman in the same sentence! Ever. Ever ever ever. Ever.
From what I know of you, I think you are gorgeous just the way you are!
 
Janelle, we are all gorgeous, but I sure wish my clothes fit better (or at all in some cases)!!!

I know--I've figured it out. Just as men get sympathy pains when their wives are pregnant, we CALS get larger as our PALS' bellies bulge. Yes, that's it!! Steph, tell your husband it's all in his honor!!
 
I feel this. I just walked over hot coals to get doctors, medical equipment, deal with the police over the deliveries of medical supplies stolen off my front steps at least three times now, meds, phone calls, paperwork. Contractors for a wheelchair ramp, a guy to do a walk in shower, a car to be converted for wheel chair use, on and on and on. Pay the bills, dead car battery, hook up pace make cords for his pacemaker, clean feeding tube, get bedding. All things I do, and will do cause I love him. But today, for just one day, I had NO appointments, no phone calls, nothing! Then it happens, the hinged lid on the canister filter for his fish tank breaks! In he walks with a book with phone numbers to call to get it fixed under warranty. A small thing, but I wanted to bend over and beat my head on the table over and over and over lol. It is like living two lives, yours, and your loved ones at the same time. I wanted to say "Oh hell no! Not today." But I took the book and told him I will take care of it. I think a small part of me likes staying busy, the constant attention to details...it doesn't leave me time to sit and think, to ponder about what is really happening to the love of my life. What life will be like if I lose him.
 
Hello all. A year ago, I didn't even know this forum existed. Having worked in healthcare for more than 30 years now, I have a strong appreciation for one's health, but now that my husband is now a patient everything has changed. I want you all to know I have learned so much from reading posts in this forum. I am terrified of the future (husband is still highly functional, but quite frail and I am witnessing the decline), but I want to be prepared. I can identify with your struggles to take care of household duties. We own a large property in rural PA, a long, 1,000 foot driveway and our plow truck recently went to the car graveyard. About 4 weeks ago we received an 18" snow fall. When I went outside determined to dig out, I was almost overwhelmed by the enormity of it all. We have a HUGE snowblower (I call it "The Beast") and it has been stalling; had to start the sucker 14 times until I got it running relatively smoothly...... Anyway, I am pretty strong but cornering/turning with The Beast is no easy chore. Long story short, between snowblower and shovel I managed to do an o.k. job. But I realized how vulnerable I am against Mother Nature on my own! We also have almost 2 acres to mow and an inground pool to take care of. I know I can do it, but as time goes by and my husband's condition worsens I know I will be absolutely exhausted. When we first got the diagnosis I totally freaked out, contacted a realtor, etc. Then I decided I cannot rip my husband away from the only home/gardens that we have loved for over 30 years. My husband is an avid gardener and we literally have hundreds of trees and flowering bushes/shrubs, etc. on the property. The plus side is that I have a great neighbor who is very helpful to me. Since he found out about Dave's condition he has offered whatever help I need. So, hoping I can muddle through ......

My respect and admiration goes out to all of you!
 
I have learned the hard way to accept all offers of help. Unless the job to be done is due to an hoa letter, when and how it happens has to be good enough.

Company is coming this next week. They said make us a list...she will cook and he will clean/degrease/powerwash my driveway. My fil will seal it on the weekend. I let my brothers in law clean my garage and organize it.I want the time with my pals so this other stuff....it can wait or swap services or pay someone.
 
Oh Turnip, I so understand. I'll just add one more "life" to what we are living: ours, theirs, and the monster's, because ALS adds to what we would normally do for ourselves or them.

There is ALWAYS something more. Sometimes I want to just crumple and cry, but then I think about him and suck it up. Well, most of the time. Be careful though. Not saying no to picking up subway for lunch ended with me turning left in front of another car and doing a LOT of damage to both. Fortunately, there were no injuries, but today when I really wasn't up to going out for lunch I said so and headed to the tub for a soak. By the time I came out, hubby was fast asleep in his chair.

Buckhorn, I have the same problem with the property. It's too much, but leaving it would destroy my darling. Fortunately, we can afford to have someone take care of the yard and shovel us out when it's real bad. My sweetie used to use a snow plough on the front of his lawn tractor, and he had me get it all ready, but I realized this year that I just can't spend all those hours doing that and still do what I need for him and for me. He was disappointed, but he called the yard crew. I've had to tell him many, many times that I can't maintain things the way he did AND do what I did AND do what ALS requires. He knows, but it's so hard. BTW, call the neighbor next time it snows. If you injure yourself clearing it, who will care for both of you?

Steph, you and I think alike about company!

Becky
 
I just keep a running list. All the regulars know where it is and just do it....and sometimes extras like the garage
 
TY gooseberry and Nuts. I will learn to accept help, when the time comes. I have had numerous offers already, and I have deferred, but have told them all, there will be a time when I will need and appreciate your help. I just don't know how this will "evolve" ..... and it sounds like none of us do. My husband and I both have living wills and durable POA. On these we have indicated no heroics and things are specified. My husband does not want to talk about "it" much, and I want him to enjoy his good times while he still has them, so I don't push a lot. I just don't know what interventions he will accept, if any.

I am VERY fortunate that (out of the blue) a neighbor who we granted deer hunting privilages to happened to show up with a snowplow to do the majority of the driveway. This was a blessing I had not counted on, and he said he would be back in the future as well!!

B.
 
I swap mowing with farm market runs with a neighbor. Another neighbor switched out headlight bulbs and checked our hot water tank. Grabbed a gift card for him. Small gestures but we all try to help each other
 
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