New to forum

[alswife77]

This is my first post to this board but I have read many of your wonderful posts. Without them I would probably be a lot more crazy than I already am. My husband was diagnosed in June but they believe he has been symptomatic for over 2 years before that. We are probably going into 3 years. First can I say that there are so many amazing people on these boards. Your strength and knowledge helps me though some of the dark times. Here is where we are. My husband uses the oxygen almost 24/7. He has said no to the bipap. He really is only able to take a couple of steps and has lost the use of one of his hands. One of his worst problems is constipation and we are fighting with the right cocktail to aleviate that. I think we may have found it. Prune juice with a prescription laxative every morning and every 3 or 4 days a teaspoon of epson salts in water. That seems to be working for now. He is still eating but sometimes has problems with swallowing. There is a lot of pain involved especially at night. He has just starting taking a small amount of morphine which he really hates doing. Just so everyone knows he has a DNR and a Living Will in place so there is only so much that will be done. Everything seems to be moving so fast. It is so hard as every day is new normal as most of you know. I am having such a hard time with the holidays. We have always made a big deal of them and I can't seem to get through the grocery store without bursting into tears when I get to the car. Just a trip to the dollar tree today was a nightmare with all the Christmas everywhere I go. How do you get through it. We have children and grandchildren and I am trying but I am just not handling it well. I do my breakdowns in the car and outside as I know it hurts my husband to see me upset. We do have hospice which have been a Godsend. From hospital bed to RXs and just someone to lean on they have been amazing. I guess I just needed to introduce myself and thank everyone for being here.

 

[affected]

Welcome but so sorry you are here.

Firstly, this is the biggest thing you are going to face, so getting through it is not easy. Do you see a counsellor? I found that really helpful, just having someone who was there to listen to my side of it and help me work through how I was feeling. Also, you may find an antidepressant really helpful. There is nothing wrong with this, I took zoloft and for me it stopped the feeling that I was constantly screaming inside.

I'm sorry it's moving so fast too, it means you just never seem to get the time to adjust to what is going on.

I wonder why he wants O2 which is bad for him, instead of bipap which would help him so much better? At the end of the day, he is progressing fast and has made his wishes known and I think that helping him with his own choices is the most important thing really.

 

[scaredwifetx]

I am so truly sorry and it breaks my heart to read a post that sounds so much like my own thoughts. The holidays have always been wonderful for us, we decorated the house, built grandkids beautiful dollhouse and car tables. I understand how you feel inside and it's very hard. I also take Zoloft and it has been two moths since starting. It does not take away all the feelings you are having but does help you to stay somewhat in control. Posting you feelings and fears no here also helps. e

 

[scaredwifetx]

Everyone on here supports one another and everyone has something important to say that will help others. We are all in this together and we all have had the same fear at one time or another. My heart and thoughts go out to you.

 

[alswife77]

Thank you all so much. I am on celexa which is like zoloft I am also on ativan for anxiety. I find it so hard to watch my husband slide down this terrible slope as we all do. My heart breaks for his pain and everything he is going through. And then I get selfish and wonder what I will do without him after 35 years together.

 

[Atsugi]

...My heart breaks for his pain and everything he is going through. And then I get selfish and wonder what I will do without him after 35 years together.

You're not being selfish at all. Not at all.

We love them so much, and we do everything we can to minimize their suffering during their remaining days.

At the same time, we have to ensure that there will be the best life possible for the survivors.

 

[affected]

It is indeed a heartbreaking thing to watch in the one we love the most.

We won't ever try to sugar-coat that here

 

[Gembead]

Feeling your pain, all we can do is take each day as it comes, still plan for Christmas and other great things and if all the plans come together then great, if not then just go with the flow, we are learning as we go and now know there is no longer a "normal". Love and cuddle each other whenever you can, keep making memories.
Love and hugs Gem

 

[lgelb]

AW,
Like Tillie, I question why he would tolerate oxygen, not generally recommended and certainly not by itself, and not BiPAP; if he has tried it and found it uncomfortable, we could help. If he hasn't tried it, you might try the "what would it hurt to try" approach. Perhaps hospice could weigh in as well. Since he still walks, he could have quite some life to live yet, but probably not without BiPAP. Of course, it is his choice but it should be an informed one.

As for pain, I encourage you to search on threads that describe mattress overlays, better pillows, foam supports for knees/heels/elbows/arms that might well reduce it. A simple hospital bed is like a foundation; you often still need to build it up for maximum comfort.

Welcome.

Best,
Laurie

 

[Green Queen]

Hello AW
I'm glad you found us to share your journey with.
God bless, Janelle x

 

[alswife77]

Tillie and Laurie He has agreed to the Bipap so maybe that will help. We have reconstructed every part of the bed but still the pain. Still working on it. He really is not walking I might not have been too clear with that. At most a couple of steps while hanging on to something. Another day and another new normal.

 

[affected]

What kind of bed and what reconstructions?

 

[alswife77]

We have a hospital bed. The first mattress was not that great so hospice replaced it. I puteggcrate foam under his mattress. He also has a pad to go under his rear end. I have pillows along the bottom so his heels do not touch the base and pillows under his leg so his heel does not touch the sheets. I bought really light sheets so that the weight does not bother him. I say leg because he is an amputee and has been so for over 30 years.As you can imagine this causes some logistical problems also especially with the shape of his leg changing and the fit of his leg. Thank God we have a wonderful prosthetist that we have been with for many years... I have rearranged everything in the bedroom so there is less for him to fall over and just tweeked some things to make life a little safer. I just spoke with hospice and they want him to come to their facility for some pulmanary tests and the sleep clinic. That would entail spending 72 hours away from home at hospice. I am hoping he will agree and we can get him stable again. He is really an easy going guy but with things moving so fast it seems to be hitting him quite hard the last couple of weeks. I see a big difference in him. We will see what this week brings. Meanwhile I am just trying to figure out what kind of food he can keep down. Thank you all for just being here.

 

[Green Queen]

AW, I just want to give you a big hug.
I'm a little teary reading your post.

If you need to cry, I'll sit here and hold your hand while you do.

God bless, Janelle x

 

[lgelb]

AW,
Did you mean to say eggcrate "under" or on top of the mattress? It is best on top. You want the bottom of the mattress to be level so it doesn't shift.

We put latex and poly pillows/foam blocks under upper arms/elbows/lower arms (once bent) to keep the ribs/shoulders more stable, and a foam belt around the thighs, with travel pillows as cushioning, to keep the hips/leg aligned. And pressure boots.

I'm sorry to hear that he's already had to deal with the loss of his leg. This has to hit all the harder. As for the holiday cheer in the stores, two words: online shopping. Even if you're not an Amazon Prime member, most everyone is offering free shipping this season. And groceries are increasingly available delivered as well.