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Cdngirl62

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Joined
Sep 9, 2007
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5
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CALS
Country
CA
State
ON
City
Windsor
Hi everyone,

My husband has had ALS for 2 years now and is progressing quite rapidly. We're off to see his specialist tomorrow for BiPap and I hope it works because his breathing is really becoming affected! He has such a hard time sleeping and each breath that he struggles with, just breaks my heart.

He is very depressed (tried to commit suicide in March of this year) and insists that he will TRY BiPap but if he doesn't like wearing the mask, he won't...

My next hurdle is a feeding tube. Wayne used to have an appetite that was GREAT... I loved cooking for him and buying all of his favourite foods and snacks on my weekly shopping trips. In the last 2 months, he only eats mashed potatoes, jello, pudding, yogurt, apple sauce, canned fruit, and anything else that's soft. He used to LOVE having his cookies at night for a snack and now, I have to talk him into that too.

Anyway, I have to coax him to eat now to keep his weight up. So far (knock on wood) he hasn't lost much weight but he is refusing to get a feeding tube.

How do I deal with this? Do I respect his wishes and watch him wither away? However long that may take?

He asked me to print out his "living will" wishes which includes NO invasive breathing machines, no feeding tube, and a DNR request.

He is still taking all of his pills but I have no idea how long that will last. Being a caregiver is hard enough... I don't know what I would do without our PSW's that come in so that I can still work through the day. But when he refuses to have a feeding tube, how am I supposed to handle that part of it?

Your thoughts are appreciated!

Thank you,
L.A.
 

trustinggod

Distinguished member
Joined
Oct 21, 2006
Messages
154
Reason
Lost a loved one
Country
US
State
CA
City
Lake Forest
Dear L.A.,

So sorry you are living this.

My friend refused to use the bipap and initially refused to have the feeding tube. She didn't want to "prolong the suffering" (her words) for herself or her family. After several visits to the doctors they finally succeeded in 'shaming' her into agreeing to have one put in. I know this because I was with her at almost every appointment. The doctor continued to tell her she was being 'selfish' by thinking only of herself and not considering how hard it would be for her family to watch her 'starve to death'. So she had the surgery when her lung function was at about 40%. The surgery itself was simple and she came home the same day. The recovery was difficult because, by this time she was completely unable to move any part of her lower body or support her weight and needed total help going to the toilet. When we lifted her in and out of bed and to the toilet it would pull on the G-tube site and hurt. She developed an infection and it took longer to heal. She was miserable. After a while she healed and we learned how to work around the tube while showering, dressing and toileting her. We learned which clothing hid it best and tried to "carry on".

The change in diet (from solids to liquid) caused many problems with her bowel movements and with her lack of muscle strength she was not able to 'move things along'. Without going into too much detail, let's just say, having someone shower her and brush her teeth took backseat to the daily humiliation she faced.

Linda had the feeding tube put in in late May of 2006. Six months later she was gone.
Did it add to the days of her life? Perhaps. Did it improve her quality of life? When I consider the two to three weeks of pain during the recovery period, the adjustment to the formula she was fed and learning to deal with the gas from air bubbles that were impossible to keep out while pouring the formula in, I'd have to say NO.

She didn't use the Bi-pap because she knew she would not agree to a trach and ventilator and didn't want to be tempted.

She talked of wishing she could "just check out" or "be hit by a bus" but knew she didn't want to leave that kind of legacy. She wanted to bear this cross and exchange it one day for a crown. Her faith gave her the courage and strength to endure each day.

I think she might still be alive today if she had chosen to go with the trach and ventilator. That is a very personal decision that each PALS must make for themselves.
I don't believe a spouse, child or parent should try to influence the decision. It's hard enough as it is. Why add any more to it?

The decisions to be made are heart wrenching. Each family must come to terms with it in there own way. My prayers will always be for those families to find a way to support the decision their PALS choose to make and to live each day fully. Linda always said,
" I will live my life as fully as I can each day with whatever function I have left. I refuse to sit around and wait to die and I choose not to extend my life after I have no function left. I know where I am going when I leave this life and I hope to see you there".
How can you argue with that?

Take care,
Jeanne
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi L.A. If you scroll to the bottom of this page there are a multitude of posts regarding feeding tubes. You can't force your husband to get one but at least let him make an informed decision. There are good stories and bad stories about them. A Bipap will help his breathing and make him feel better in the daytime and maybe even improve his disposition. There are a few threads on getting used to a Bipap. Search for them because you may be able to give him ideas to help him get used to it. Good luck and let us know if you need help. AL.
 
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