Old 12-13-2014, 06:30 AM #16 (permalink)
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Default Re: Wake up call and hard choices

What would I do without you all?

I just returned from putting my mom and sister on a plane. It's done (well, except for shipping things to her as she asks for them; she has hopes of returning one day and wants to leave her footprint here. That's ok, i have more space for storing it and it will certainly be easier for her to deal with it in small bites).

I've given a lot of thought to change lately and how it varies. Just in the past week:

Small change: moving the stainless steel trash can with a lid that opens by stepping on a pedal to the laundry room and bring the Rubbermaid open top trash "can" to the kitchen (we'll see who is astute enough to understand why and who asks when the crowd arrives for Chrismas).

Medium change: Booties arrived yesterday to keep my hubbie's ankles and feet from turning in and dropping at night. A year ago he would NEVER have consider sleeping in them. Last night he asked for them and wore them until I returned from the early morning airport dropoff. I must admit that I was surprised.

Big change: My sister picked mom up and took her back to California this morning, ending three years of caretaking for her (for those who don't know, she came to live with us after breaking her hip. She also has only one arm/hand she can use and has Parkinson's). I love and will miss her, but I'm now alone with my sweetie! It's kind of like having the last kid grow up and move out, and you can bet that we will milk every moment of privacy and freedom that we have left.

Now I find myself worrying about my sister and the rabbit hole she's just jumped down, but she's a wonderful, capable woman and I think mom is going to be happier than she expects.

OK, time to go nudge the bear that is making such a racket next to me
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Old 12-13-2014, 06:40 AM #17 (permalink)
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Default Re: Wake up call and hard choices

Congratulations Nuts. You will appreciate having the privacy and time with your husband and I expect worry less knowing your mom is also well.cared for by someone you trust. Big steps for you today....how are you celebrating?

Interesting comment you made about the booties. Steve doesnt have foot drop but I got him socks in a bigger size to wear at the house for warmth. He leaves them on all the time, even at night, because his feet are always freezing. Every once in a while if they are off he will run a foot down my leg..they are like ice! He says its payback for all the times I put my cold feet on him!
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Old 12-13-2014, 01:23 PM #18 (permalink)
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Default Re: Wake up call and hard choices

Hope you and your bear enjoy having the den all to yourselves today!

Congratulations on trusting your sister and trusting that your mom will do well in California with her. It's not easy letting go. My 87-yr-old mother has Parkinson's and limited mobility also and it's been difficult letting some of her care go, but my own sister is stepping up in ways she never has in the past and it's building confidence in them both. I don't think my sister thought she could ever do what she is now for my mother (partly because my mother thought I was the only one who could take care of her). They're both learning. And ALS is teaching me more than I could've imagined--that I'm really in control of so very little, and the rest I have to let go of the easy way or the hard way.

I truly wish you and your husband wonderful times together alone, and you lot more rest now! The best to you!
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Old 12-13-2014, 01:53 PM #19 (permalink)
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Default Re: Wake up call and hard choices

Nuts, change is always bittersweet but I'm so glad some of the pressure is off you. You have enough to do keeping your husband's life the best it can be! And you will never regret that! Hugs to you both as you savor the quiet time alone to just enjoy each other's company.
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Old 12-13-2014, 02:38 PM #20 (permalink)
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Default Re: Wake up call and hard choices

Nuts, I'm doing the happy dance here!

No matter how hard it was to get to this place, you have achieved so so much. If you think about it, you have also now given your sister and mother an opportunity together. It's up to them both what they make of this.

And you have given yourself and your husband the opportunity now to 'be'. Oh couldn't help dancing again!
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Old 12-13-2014, 04:38 PM #21 (permalink)
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Default Re: Wake up call and hard choices

Enjoy each other Nuts, letting go of mum and passing her onto your sister must of been very hard for you all, wishing you and hubby a very happy and blessed Christmas.
Love Gem
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Old 01-03-2015, 10:05 AM #22 (permalink)
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Default Re: Wake up call and hard choices

You all really helped me with this decision, thank you so much! I thought I'd update you all before this thread closes out. Mom moved into her new place Wednesday and seems to be doing well. It was truely in the nick of time for me, and hubby and I are greately enjoying our time alone together.

Unfortuantely, things seem to be speeding up with my sweetie, so I'm incredibly thankful to by caring for only him. He is becoming short of breath very easily, and his breathing at night is shallow and fast. I finally convinced him to e-mail his doctor, and we're headed into the clinic Tuesday to get it checked out. He'd asked me to quit nagging him, so I did---I just emailed him one of the threads that discusses missed windows of opportunity for DPS--and it did the trick.

I also spoke to my doc who started me on Lexapro, and it seems to be helping. I made the mistake of missing a dose two nights ago, and yesteray was awful, so I won't do that again! I'm amazed that one skipped dose could have such an effect.

Our bathroom is, hopefully within a week of being finished, and probably none too soon, so I think the next thing to discuss with the VA are a lift and lateral turn mattress, as my sweetie's legs are failing fast and he's having increasing difficulty turning over in bed. Physical therapy after his surgery brougt his legs back, but once he stopped improving he almost immediately started to weaken. In the meantime, he plans to return to work Wednesday, teleworking for the first two weeks and then going into the office two days and working from home three. I know he's bored, so the work will be good, but we'll have to see about those days in the office..
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Old 01-03-2015, 02:38 PM #23 (permalink)
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Default Re: Wake up call and hard choices

Nuts, I think you are terrific and really happy for all the positive changes you have put in place. My husband loves working and it really keeps him going and keep a positive outlook. he works on the computer at home of course--mostly marketing and web stuff for our company. it is good at home because he can rest when tired and doesn't feel the daily stress.
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Old 01-03-2015, 06:26 PM #24 (permalink)
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Thank you, Barbie. We'll see how together I have it in the future Seriously, I wouldn't have had a clue if it weren't for you and everyone else here sharing your stories. I do have an aweful feeling that there's something big I'm missing, but I guess that's normal.

I think working will be good for my husband also. He thrives on it. Unfortuantely, he's used to putting in 60 and 70 hour weeks (including all the late nights on the computer after I go to bed), but I think he's accepting the fact that he's going to have to cut back. To be honest, I'm about ready for him to start working again--it energizes him and keeps him from finding things for me to do!
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Old 01-03-2015, 11:18 PM #25 (permalink)
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Default Re: Wake up call and hard choices

>but I think he's accepting the fact that he's going to have to cut back. To be honest, I'm about ready for him to start working again--it energizes him and keeps him from finding things for me to do!

also remember the rules:

#3 conserve energy, rest, never push it, try to relax

------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins
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Old 01-04-2015, 05:37 AM #26 (permalink)
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Default Re: Wake up call and hard choices

Max, that's a tough one here. He's been determined to do what he can while he can--that whole quality vrs quantity thing. I was on the lawn tractor mulching leaves in early December. That was hard on him as that lawn tractor has always been a very happy place for him, but he managed to join in the fun by getting out the leaf blower, resting it between his feet in the PWC, and blowing the concrete in front of the garage! It left him exhausted, but he was soooo delighted with himself! I TRY not to nag too much, since that spirit is what keeps him going, and it's probably why he remains soooo positive, but it's tough since I realize what it may be costing him. Hee Hee...I try to remind myself that at least he's not getting himself stuck in a swimming pool!
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Old 01-04-2015, 07:26 AM #27 (permalink)
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Default Re: Wake up call and hard choices

>but he managed to join in the fun by getting out the leaf blower, resting it between his feet in the PWC, and blowing the concrete in front of the garage!

that is one I'm going to try!
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Old 01-04-2015, 04:28 PM #28 (permalink)
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LOL nuts! I find my husband works for only a few hours a day. between eating and bathing and sleeping he is only working for 3-4 hours. then in the evenings and weekends, he has his computer room all set up so he is downloading movies, facebooking, texting, watching TED talks, reading up on things and of course his favorite--shopping on Amazon! the computer keeps him active and happy ( and me with plenty of movies to watch)
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Old 01-09-2015, 06:41 AM #29 (permalink)
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Default Re: Wake up call and hard choices

Working really has energized him, Barbie! Now...let's see if I can get back to my daily walking routine!

Well, we went back to the clinic earlier this week to have hubby's breathing checked. His numbers are good, but when I played the recording of his snoring the RTs mouth fell open. Yes, the obstructive sleep apnea is back after all these years. DUH! The initial plan was a sleep study, but going through the VA that could take awhile and our VA hospital is apparently using BIPAPS while the ALS clinic goes straight to the Trilogy. They are running it through our private insurance now to see if they will cover it based on the ALS diagnosis (no sleep study or falling numbers needed). My fingers are crossed. I know we'll both wake feeling more refreshed if he actually breaths all night and I appreciate starting with the equipment that will take us the rest of the way through this journey.

The bathroom MAY be finished today. PLEASE PLEASE PLEASE!
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Old 01-09-2015, 06:57 AM #30 (permalink)
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Default Re: Wake up call and hard choices

Quote:
Originally Posted by Nuts View Post
Working really has energized him, Barbie! Now...let's see if I can get back to my daily walking routine! (That would be great to get back to your routine - everyone needs this - I find my power walk everyday or nearly everyday helps refresh my mind even tho it's been around 5-ish degrees)

Well, we went back to the clinic earlier this week to have hubby's breathing checked. His numbers are good, (AWESOME!) but when I played the recording of his snoring the RTs mouth fell open. Yes, the obstructive sleep apnea is back after all these years. DUH! The initial plan was a sleep study, but going through the VA that could take awhile and our VA hospital is apparently using BIPAPS while the ALS clinic goes straight to the Trilogy. They are running it through our private insurance now to see if they will cover it based on the ALS diagnosis (no sleep study or falling numbers needed). My fingers are crossed. I know we'll both wake feeling more refreshed if he actually breaths all night and I appreciate starting with the equipment that will take us the rest of the way through this journey.

The bathroom MAY be finished today. PLEASE PLEASE PLEASE!
(Hopefully there were no snags with your bathroom remods and everything is working all right for you guys, Nuts!) Have a happy day ... Heather xoxoxo
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